Riding in memory and in tribute

Soggy but happy it is over after Ride London 2014, with team member Andy Stevens

Last year I pledged to ride each mile of Ride London in honour of a named individual.  I was delighted to receive 99 names and the last mile of the 100 was in recognition of all those in the future who will develop bowel cancer.  The best laid plans got hijacked by the remnants of Tropical Storm Bertha and the ride was cut down to "only" 86 miles, due to the exclusion of two hills.  This really meant something special to me and did keep me going on the day.  I did soon after ride the extra miles and have kept all the names and think of them as I have continued riding.

But, this year,  I want to pay tribute again as I not only do Ride London but as I also ride from London to Paris. I will begin by starting with those names generously provided last year.  Sadly this list now includes people whom we have since lost.  This list is below.

And there is one name I want to add now, before I ask you to send me others.  This is Gary Logue, our dear colleague and Beating Bowel Cancer nurse adviser, whom we lost last November.  He was an outstanding nurse and an inspiration and, although he did not die of bowel cancer, it is right he is remembered along with many of those whom he helped.

But, my riding this year is not "just" 100 miles in Ride London on 2nd August, but a total of 3,000 miles this year.  This includes 280 miles riding from London to Paris between 10 and 14 September. So, there is ample scope to remember many more people affected by bowel cancer.  You might be one of them, or it might be someone close to you who currently going through treatment, or who has survived bowel cancer.  Or it might be someone whom you have lost.  Please let me have the name.  I promise to ride a mile in their name.  Just email me: mark.flannagan@beatingbowelcancer.org.

You do not have to donate to have someone remembered in this way.  I would see it as an honour to receive a name.  But, if you do wish to donate you can so at the link, and just mention the name you want on my list when you make your donation.  Donate here https://www.justgiving.com/Mark-Flannagan5 or you can text to give by texting BUMS63 to 70070 and your donation amount (but don't forget to email a name separately).

Thank you

Mark

My names I will ride in tribute to:

Anne Carlin; Taryn “Smithers”; Gail Allen; Philip Willingham; Bill Bonfield; Beverly Jackson; John Hepworth; Effie Macdonald; Geraint Jones; Hannah Berry; Hazel Elkamouri; Alison Selfe; Alison Michell; Tony Levy; Jane Bardsley; Stewart Coxe; Susan Wilde; John Anton; Lisa Almond; Nia Jones; Ethel Randles; Ann Cole; Heather Spooner; Rose Sloper; Sally Tuxworth; Dafydd Farr-Jones; Susan Hill; Teresa Dealessi; Toni Millard; Mary Woolnough; Bill Luff; Olive Bennett; Melanie McGarry; All the Bum Bandits; Paul Bradbury; Matthew Stockdale; Elizabeth Fountain; Ian Fountain; Nick Busby; Lynda Leach; Steve Smith, “Smiffy”; Billy Randles; Len Miller; Pat Morton; Carmen; Ke’hley; Lucy Edwards; Margery Hunter; Tracey Bushell; Avril Williams; Stan Williams; Andy Higginson; Chris Garner; The mother and father in law of Liz Torr; Myra Beckwith; Patricia Johnston; Valerie Johnson; David Hogan; Maxine Gould; Andrea Barlow; Pat Gravell; Ruth Spencer; Jim Marks; Cheryl Marks; Tim Brennan; Bob Johnston; Francis P. Rooney; Kim Cooper; June Watkins; Johanna Wathan; Kathleen Cannon; Elisabeth Strong; Keith Wiggans; Carly Wilton; Genie Henley; Mark Barnard; For all those on the Forum; David Craton; Leo McGill; Peter Bainbridge; Ian Mashen; Cath Scurrah; Mark Robson; Derek Ieuan Lewis; Rae Heald; Irene Wood; Mrs Awobode; Maggie Ryan; Malcolm Hume; Sandra Stokes; Pauline Toft; Steve Hyde; Kath Maynard; Ben Ashworth; Kate Kunzer; John Dixon; Pete Andrews; John Barrett; Roger Band; Gary Logue

The challenge

Imagine that you are told one day that you have a cancer that isn't normally talked about - it's not polite to talk about things to do with bottoms and bowels.  Imagine the shock. Perhaps you know nothing about bowel cancer.  Perhaps you did, but heard that it is a killer - you had a relative or friend die of it and they were told that nothing can be done. So, you now have to deal with this, come to terms with having a "really bad" cancer and summon up your courage to find out what can be done, whether you will survive and, if so, what the treatments will do to your body.

I have been very quiet of late and haven't begged (or should that be bugged) people for their donations.  It's time to change that!  It's time to help me to help Beating Bowel Cancer to help all those affected by bowel cancer.

Raising money for a charity is a challenge.  We all know that asking our friends and family for yet another round of sponsorship is something that we feel awkward about.  Even I, as a cancer charity Chief Executive, sometimes feel it is difficult to ask for sponsorship for my cycle challenges.   But, let me talk about a real challenge.  The challenge of living with bowel cancer.

This challenge is one that someone faces every fifteen minutes.  Bowel cancer is incredibly common - shockingly so.  One in four of us has some connection to bowel cancer - probably someone in the family has had it, or has it now.  That is why Beating Bowel Cancer has a huge job to do.  Our vision is to beat bowel cancer by bringing people together.  We bring people together to raise awareness, so this common cancer is more commonly spoken about - breaking down the taboo to make it easier to get the message across about symptoms and treatments.  We bring people together to help everyone affected by bowel cancer - providing information, support, reassurance, and hope.

Our nurses are a visible example of our work.  They answer calls and emails, providing an individual, expert support to someone who needs it.  Our website and online Forum are also there, 24 hours a day, to provide information, but also to connect people with each other, breaking down the barriers that bowel cancer can bring, providing a source of hope and inspiration.

So, friends, I need your support.  I am well on the way to my goal of cycling 3,000 miles to raise funds for our vital work.  I would like your donations/sponsorship, whatever you want to call it to help the work of Beating Bowel Cancer.  My challenge is nothing like the challenge someone is forced to face up to every fifteen minutes.  My challenge involves turning my legs over some hundreds of miles and up some (very steep at times) hills.  But, by so doing, raising money, raising awareness, I want to do my bit as Chief Executive of Beating Bowel Cancer.  I would be grateful for your support.

Please be generous.  You can donate at https://www.justgiving.com/Mark-Flannagan5. 

Thank you so much

Half way there - time for your support, please

At the beginning of this year I set out to ride a total of 3,000 miles, to raise money for Beating Bowel Cancer.  Well, the riding is going very well – to date I have ridden 1,619.5 miles.  It hasn’t been as easy as you might think, even if I am now a fully paid up MAMIL (middle aged man in lycra).  I have battled in the wind and the rain.  I have ridden darkened roads with cars behind me determined to make me yet another cycling casualty.  I have ridden up some tough hills, my biggest achievement to date being Whitedown lane, noted as one of the steepest climbs in Surrey (with bits rising to a gradient of 20%).

Some of the team at the top of Box Hill

My next challenge, one of many, is to complete the VelothonWales on 14^th June, which is 85 miles in the Welsh mountains, including a 6km ride up The Tumble, one of the toughest challenges in the UK.  I promise you, I will earn that medal.  It is a very tough challenge to be completed in a limited time.

And all I ask of you is your generosity to make it all worthwhile.  You can donate at https://www.justgiving.com/Mark-Flannagan5.

The charity which I lead, Beating Bowel Cancer, has set out ambitious, but entirely achievable goals to save 9,000 more lives over the next five years, by getting more diagnosed earlier.  To do this we need to raise awareness of bowel cancer and be clear about the standards of care that patients should receive if they are, in their own way every day, to beat bowel cancer.  Alongside this, we will go on providing support to individuals facing a dreadful diagnosis of bowel cancer – the UK’s second biggest cancer killer.  Beating Bowel Cancer runs the UK’s only nurse-led helpline for bowel cancer patients, described as a “lifeline” by many.

I am determined that we can make a difference.  I am showing that determination by my own efforts this year to cycle 3,000 miles.  This is a real challenge for me – although nothing compares to the challenge faced every day by those dealing with bowel cancer.

If you can, please give generously.  And to those who supported me last year in my Ride London fundraising campaign, thank you.  Please support me again in my even tougher challenge.  Help me to beat bowel cancer.

Please be generous.  You can donate at https://www.justgiving.com/Mark-Flannagan5. 

Thank you so much

That was epic

Who would have thought it a little over a year ago when I posted my first blog?  Last Sunday I rode 85 miles in the howling wind (40 mph gusts included), lashing rain (Ride London 2014 all over again), freezing cold (and boy were my feet cold from just a few miles in), and endured 8 hours and 50 minutes in the saddle.  And I loved it.

The Evans Woking Ride It sportive was supposed to be a test but I didn't expect it to be an endurance ride.  I thought I would be challenged, but never like this.  Just as well I wasn't going for a fast time because I effectively came in last, with three of my fellow Woking CC riders.  Here is the proof - our list of times.

I set out from the house at 7.30am, having been awake, and to be honest a little excited, since 6am - on the Sunday the clocks went forward.  So, I wasn't exactly rested.  I met a few others from my cycle club and we made our way to the registration and start.  A lot of our club were taking part so it was easy to find a sizable group of ten who were happy to ride together at a reasonable pace.

For days we had been checking the weather hoping it wasn't going to be a repeat of Ride London 2014 - i.e. raining!  But it wasn't to be.  The forecast was grim - rain and strong winds - and it proved to be entirely accurate.  Still, as a group were cheery as we were all up for the challenge.  The route turned out to be amazing. We all thought we should do it again sometime - when the sun is shining.

We made reasonable time to arrive at the feed station at 34 miles and knew all we had to do was a loop out from there, back to the same feed station and then the familiar ride home of 26 miles, at which we hoped to pick up some speed.

But.  The middle bit of the ride was pretty awful.  Just riding was like constantly going uphill because we were always battling into the wind.  The roads were awful because the rain washes stones, flint, glass, mud, bits of tree and hedge right across your path.  This makes cycling tedious as you have to really focus on what is right in front of your tyres rather than looking up around you at the world passing by.  And then, for two us, the irritation began.

Between myself and Jez we had six punctures - he had four I had two.  These are a pain on a normal day.  On a sportive you really don't want them as they slow you down and take the momentum out of your ride.  Then when, a few miles later, you have to change another one...well, let's just say you have try very hard to remain polite in company!

Jez (right) remains cheery despite another puncture

So, we soldiered on and reached the feed station for the second time some 6 and a half hours in - about the time we could have expected to be finishing on an extremely leisurely ride.  By this time we had split our group and I was riding with three others - and it turned out that we were most definitely the last four in the event.  We were so far back in the field that the Evans' man who was riding the course taking down the signs pointing the way was just a few minutes behind us and, at the end, caught up and had to mark time to save our embarrassment.

We made it back though.  Clocking in at 8 hours 50 minutes plus. We didn't care.  In fact I think we were strangely proud of coming in last.  Finishing is everything.

Thank you Evans for a great ride.  Your staff were fantastic.  I would do it again in a heartbeat.

And, if you have read this far, that surely must deserve a donation. Thank you  https://www.justgiving.com/Mark-Flannagan5

Time to get serious

300 miles a month.  That is what I need to do to achieve my target of at least 3,000 miles cycling this year.

£6,000 = my fundraising target - enough to fund our Bowel Cancer Helpline for a month.

Both are big challenges for me to achieve.  But neither compares to the challenge people living with bowel cancer face every day.

I am not asking you to support my cycling - although cheering me on physically and virtually is always welcome.  I am asking you to help the work of Beating Bowel Cancer - the support and campaigning charity for everyone affected by bowel cancer.  Beating Bowel Cancer does not receive any government funding.  Most of our money raised each year is from individuals who recognise that beating the UK's second biggest cancer killer should be a priority for us all.  What Beating Bowel cancer does with that money really makes a difference.

We fund the UK's only Bowel Cancer Helpline, which allows patients and others talk directly to our nurses by phone or email.  What our nurses do is amazing, and is often a lifeline for those in need. I have heard our nurses talk to patients facing the bleakest of outlook and help them make choices that has led directly to a better result.

We produce a range of information booklets, a vital source of support for patients, and often their families, because the questions that worry them most are the ones that they find answered in our booklets.

We connect people affected by bowel cancer, every day through our unique online forum, where those with direct experience of bowel cancer can share these experiences in a helpful and honest way.

Our annual Patient Day brings together almost 300 patients and carers to hear from leading doctors and nurses about bowel cancer treatments and new developments, and also provides people with a place to share each other's hopes and concerns.

We campaign to make things better for bowel cancer patients and to make bowel cancer a priority in society.  We campaign to make everyone aware of the symptoms and to get more people diagnosed earlier - both will save lives.

We are a voice for bowel cancer and without our voice life would be a lot worse for many dealing with bowel cancer.

So, my cycling is my personal challenge that will help Beating Bowel Cancer meet the challenge of bowel cancer for many.  My target is to cycle at least 3,000 miles this year in total.  This will be a step up from my normal efforts and a real stretch for me that will require dedicated training. I aim to earn your donations!  Please support me via Cycling to Kazakhstan and please share it with others.

Thank you.  XX

A rational approach to rationing

The recent decision to remove some drugs from the Cancer Drugs Fund approved list generated stark headlines, combative comments and an apparent wide chasm of views.   

But whatever the reaction it is clear that when it comes to long term funding of cancer drugs both the Government and the drugs companies have failed to seize the opportunity and both must share the blame for failing to fix this problem.

It would be helpful to begin with a reminder of why the Cancer Drugs Fund was set up in 2010.  Prior to the Fund existing we saw repeated cases of cancer patients told they could not get new cancer drugs on the NHS because NICE had said, based on their existing model, that they didn’t meet the criteria for cost-effectiveness.   To some this seemed a hard but reasonable approach, given that the NHS has limited funds and these drugs would “only” given patients a few more months of life at best.  Cancer doctors, patients and health charities knew that the truth was more complex.  These new drugs would often lead to not weeks or months but in many case years of extra life and the quality of this life would be infinitely better and pain-free than the alternative life without them.  That is why we fought so hard to make the case for a better approach that would give cancer patients access to new drugs that provided real advances in their treatment and prognosis.

The Cancer Drugs Fund was only supposed to be a temporary measure to provide cancer patients and their doctors with certainty that they would get new drugs of proven effectiveness.  Everyone recognised that a long term solution was needed and we all awaited the publication of new proposals for this, called “value based pricing”.  Sadly this has never appeared and, in the meantime, the demands on the Fund grew because NICE continued to reject drugs. Yet there has been no review of why NICE continues to reject these drugs for funding on the NHS, despite the evidence that NICE’s systems for deciding this are increasingly irrelevant to the new, targeted treatments that are becoming available.

The recent argument in favour of dropping some drugs from the Cancer Drugs Fund was that these drugs are not clinically effective, that “None of the drugs showed evidence of prolonging life by more than three months, and many had nasty side effects with a serious impact on quality of life.”  The truth is that the evidence required to assess these drugs is limited to clinical trial data made available by the individual pharmaceutical companies.  This data is, by its very nature, subject to severe limitations on its validity for the wider patient population.  In fact, thanks to the last four years of the cancer Drugs Fund we have a wealth of available data about the impact of these drugs on patients outside of a clinical trial and we believe this evidence will show the drugs have a massive effect on extending and improving the quality of life.  But, despite repeatedly being asked to by many cancer charities, NHS England has refused to make this data available and, importantly, use it in its assessment of the effectiveness of these drugs.  The reality outside of a restricted, outdated process is that patients do live a lot longer than the trials indicate.

Take Simon, diagnosed with advanced bowel cancer over four years ago. Thanks to the Cancer Drugs Fund he was given a drug that according to NHS officials would not prolong his life by more than a few months.  Simon is still here, very healthy and with a normal quality of life.  The fact is that his treatment worked, and allowed him to go on and receive further treatments that also worked. 

If patients like Simon are diagnosed after 12^th March this year they will be refused funding for the same treatment with devastating consequences. That is why Simon is campaigning hard for a change of heart and he wants the Prime Minister to listen to patients and keep his personal promise on cancer drugs.

Simon Hawkins has a clear message for the PM

But, we all know that the Cancer Drugs Fund should be no more than a temporary measure.  Few of us want to spend time defending a short term fix.  But, if the Fund is a sticking plaster then it is wrong to rip that plaster off and, by removing key drugs from its list, leave a gaping wound without better alternative in place.    We should not act in haste without knowing we have fixed the problem for the long term.  Without this solution then we risk returning to the repeated problems that brought about the need for the Fund in the first place.

Patients want to know that the system is working for them not against them. Patients cannot afford for the system to give up on them. The NHS needs to urgently get round the table with the drugs companies to see what can be done to protect access to these treatments.  We should not give up on cancer patients.  Patients should not pay the price for a failure of imagination and will on the part of others. We should put in place a long-term solution that has the confidence all cancer patients.

Cycling to Kazakhstan

Okay, a slightly misleading blog title.  I am not actually cycling to Kazakhstan.  But this year I will attempt to cycle 3,000 miles, or just under 5,000 km.  That is like going all the way to that central Asian, land locked country.  It is all to raise funds for Beating Bowel Cancer - the support and campaigning charity for everyone affected by bowel cancer. I hope I can make a go of it. Last year I got on a road bike for the first time and did the Ride London 100 in August.  I have set myself an even greater challenge this year and, in taking on this challenge, I want to raise £2 for every mile cycled - that's £6,000 to help Beating Bowel Cancer in its vital work.

I was very grateful for your support last year when I took part in the Prudential Ride London.  I was very touched by all the messages I received.  I was also touched to hear your stories about how bowel cancer affects you and why supporting the work of Beating Bowel cancer is important to you.  But, if I said I was simply going to do it again and wouldn't it be good if you could support me I might be told "so what, you like cycling now, where's the challenge in that?".  I would tend to agree.  So, my challenge this year has to be greater, just as each year Beating Bowel Cancer has to have bigger ambitions to beat bowel cancer.

The challenge won't be easy.  To achieve my goal of 3,000 miles in training and events I will have to be out consistently on my bike quite a few days each week this year - pretty much every day as the nights get lighter.  Doing specific events will help me focus, as I couldn't do them without training. So, I am taking part in, at least: the Woking Sportive in March (85 miles); the Wales Velothon in June (75 miles); a Summer Solstice ride in June with my cycle club (102 miles); the Prudential Ride London in August (100 miles); and I will ride from London to Paris in September (280 miles).  It is all to raise vital funds for Beating Bowel Cancer.  I want to fund our excellent nurses, our information booklets, our events bringing together bowel cancer patients and our campaigns to beat bowel cancer.

So, can I have your support this year?  I will need it.  £6,000 is the equivalent of £2 per mile.  So, how many miles will you sponsor me to cycle?  I expect to be fitter and slimmer by the end of the year - and I will also know that I have helped Beating Bowel Cancer to help more people.

Please show your support by donating via my Just Giving - Cycling to Kazakhstan - page and please share it with others.