A year of achievements

I don't wish this to be like a "round robin" letter, but in taking stock of the past year I can now see that it has been incredible. More people are aware of bowel cancer, Beating Bowel Cancer has helped more people, we have been closely involved in improving outcomes patients and developments in screening as a result of our campaigning. We can celebrate a real year of achievements.

This year we have, together, raised more awareness - on the streets, in newspapers, local and national radio, through events and campaigning, and much more. In so doing more people have heard the words "bowel cancer", perhaps for the first time, and more people will have got the message that it is serious, but beatable.  As we look to next year we can expect that some of them will spot the symptoms and get diagnosed earlier as a result - potentially saving their life.

We have also delivered support to more people affected by bowel cancer, with our Nurse Helpline (the UK's only nurse helpline for bowel cancer patients) often being a lifeline for those facing gruelling treatments, but also helping those worried about symptoms that scare them. Our Patient Day was another resounding success, with more attending than ever before. Patients tell us that they’re ‘stronger together’ and giving people the opportunity to support each other is right at the heart of what we do. The day remains a very special one in our annual calendar. We also reached out to the many fantastic nurses around the UK, with a national conference for colorectal nurses in London in September and a study day for nurses interested in bowel cancer in Glasgow in November.

In April, bowel cancer awareness month, we focused on improving screening methods, identifying inconsistencies and calling for the immediate introduction of an easier to do more sensitive test.  It was gratifying when Public Health England responded so positively and announced a pilot.  At the same time we launched our "Lift the Lid" message to get everyone talking about bowel cancer and had a phenomenal take up - with celebrities and leading politicians joining the conversation.

We also continued our focus on the need for cancer patients to get the drugs that their doctor says are vital to help them extend their lives and improve the quality of their lives.  We have been at the heart of a coalition of cancer charities pressing for a sustainable solution that guarantees these drugs will go on being delivered.  As we end the year it appears that we are being listened to and both the Coalition government and the Labour Opposition have now pledged that new cancer drugs and treatments should receive funding.  Now we need to work to ensure that how this is done is in the best interests of bowel cancer patients.

And let's not forget it being an amazing year of fundraising - it's what charities do to ensure we can go on doing what we are here for.  Individuals right across the UK, and quite a few from overseas, have supported us through their efforts.  Thank you.  Every one of you.  It is humbling to have your support for what many of you have called "a great charity".  I took part too - in that wet and wild Ride London in the tail end of a hurricane.  As a result I got the cycling bug and a whole lot fitter.

We have also suffered many losses - too many friends have been taken by bowel cancer. We also had the dreadful shock of losing our colleague and Beating Bowel Cancer nurse Gary Logue. We will remember them as the new year starts.

We know we have much more to do. We’re looking forward to making even greater progress in 2015 which wouldn’t be possible without your support.

You have all been amazing - it is a privilege to work with you. Season’s Greetings and I wish you all a peaceful festive season.

Mark X

It's time for beards

I want to talk about beards.  Not because I have one.  I don't.  But surely most men have wondered what they would look like with a beard?  And now is the time to try it out as Beating Bowel Cancer's Decembeard campaign has come round again - and this year it has a whole new look and a renewed momentum.

First, let me remind you of the campaign's origins.  Decembeard was established in the UK in 2011 after Chris Evans announced on twitter that he was going to take part in Decembeard as he’d missed Movember. Alison Selfe, a Beating Bowel Cancer supporter sadly no longer with us, immediately tweeted him back asking him to "do it 4 Beating Bowel Cancer", as she knew his father had died of the disease.  Chris Evans said "Deal" and the campaign was born.  I have to confess, like most men I suspect, I have always wondered what I would look like if I grew a beard and the chance to find out was too great. I immediately tweeted that I would join in.

My first ever beard - so proud!

The campaign has since has proved to be a huge success.  I make no apologies for the fact that it has raised money for us.  We can only do the work we do and help more people if we raise funds.  You only need to look at the transformation of Prostate cancer UK as a result of the many millions raised through Movember.  Greater public awareness of Prostate Cancer and the charity's ability to deliver more support to patients and families shows it's unarguable that fundraising does good.

For Beating Bowel Cancer, our Decembeard campaign has done something else.  It has got people talking and it has got bowel cancer a lot of attention.  That is good.  One of the frustrations expressed to me when I took over as Chief Executive in 2010 was that it was difficult to "cut through the noise", get ourselves heard and get attention for bowel cancer. So, every little helps and Decembeard is more than a little.  It is different.  It targets people who might otherwise ignore bowel cancer - men, particularly younger men.  It grabs people's attention just because it often uses humour.  Good charity communication is not about preaching or convincing people to be better or give more.  It is about making a connection and helping people "do good" in simple ways.

So, that is why we have worked hard to make Decembeard a big thing.  And the fact that it is big, and we hope will get a lot bigger, means we can do more as a charity.  We can go on funding the UK's only bowel cancer helpline, run by our fantastic nurses.  We can keep producing and distributing our accredited, vitally informative booklets and keep adding to them when we identify the need - such as the very recent one that addressed the anxieties people feel when waiting for their latest scan results, the "scanxiety" fact sheet.  We can keep holding the UKs, if not Europe's, largest meeting of bowel cancer patients, the annual Patient Day.  We can continue to make a noise about bowel cancer.  If we can make Decembeard bigger, very big, we can do big things.  We can reach more people, our nurses can support more people, we can run awareness campaigns to break the taboo that is bowel cancer. In short, we can beat bowel cancer in many more ways.

So, I am doing my beardy thing again!  I will be growing my stubble from 1st December, despite the fact that it really is not a very attractive look.  You can sponsor me here: Mark's Decembeard 2014.  I really am very grateful for your support.

But, why not go one better. Grow (or wear a false) a beard. Join in the fun and the fundraising.  Sign up to Decembeard at the fantastic new website. Remember - Real Men Grow Beards.

Sorry for the silence

It has been a while.  Thanks to two weeks holiday in September and then three pretty hectic weeks attending political party conferences I have not been in the office very much.  So, bear with me whilst I catch you all up.

First, on a personal note, my holiday was superb.  I am from the North East, as is my partner Karen, and going back up there (to a rented cottage near Alnwick) was a real tonic.  I was immensely proud of Karen as she started our week away by running the Great North Run, in bum shorts!  She started running simply to do the GNR, having got a ballot place and raised over £750.  She ran in a time of 2 hours 35 minutes which is pretty good for a first timer and on a very sunny day.  I was blown away by the crowds and, at the charity tent after, was chuffed to meet our team of runners as they came to say hello.  Everyone was brilliant but, if you don't mind, I will say I have a particular admiration for Ben Ashworth who did the GNR before going on to complete the sixth marathon of his target.  In fact Ben then went on to do another seventh marathon - and all while undergoing chemotherapy.  He is a hero.

Karen got a lot of attention running in bum shorts

After my two weeks off it was straight into party conference season, whereby I attended each of the Labour, Conservative and Liberal Democrat conferences.  The purpose is two-fold: to meet influential individuals within the parties, but also to connect with others in the charity world and in business who might be key partners in future.  We do not usually attend but, as these conferences are the pre general election ones, it is worth attending as you are talking about policies that could see the light of day within a year. In fact one of the best conversations I had was with the CEO of the Girl Guides, where we able to compare notes on our very different challenges.

The problem with being away is that you miss so much in the office.  That said I suspect the charity staff don't mind me not being there to have ideas! While I was away we had a very successful reception for some supporters at the residence of the London Lord Mayor, Mansion House (which I came back to attend), continued to work hard on getting sign-ups for Decembeard (join in the fun here) and staff discussed the results of a survey of their views about what works in the charity and where we could do better (vital if we are to always to perform at our best and achieve our goals).

Now I am back in the office.  The chilly air and leaves turning golden are a reminder that the year presses on.  So, it is time to focus on making the second half of the year as successful as the first. Plus we need to start thinking about the future, looking beyond 2015 to how we can be there for more people, get more people diagnosed earlier, campaign for better healthcare for bowel cancer patients and, yes, raise more funds to do all of this.  It is going to be a fun winter.

And, oh, yes.  Cycling.  Still getting out on the bike.  Just not as much as I would like thanks to being away and the nights getting darker.  And falling off!  I am afraid I failed to jump up a kerb properly and did a comedy fall over the handlebars fall, denting my helmet, probably cracking a rib and badly damaging my ego!  Bound to happen one day.  Here's to more time on the bike and next season will be about doing more rides.

Funding new cancer drugs to benefit bowel cancer patients

Since I last blogged I have been involved in various meetings and phone calls about a vital subject - getting new cancer drugs to patients in England.  You may have seen a little information about this on our website: Cancer Drugs Fund announcement.

We have also been working in Scotland and Wales to support bowel cancer patients and to press for urgent reform of their approaches.  Indeed, the Scottish Government has pledged to introduce a new system designed around the principles we outlined, although I suspect the pressing matter of a referendum on independence has been occupying their mind more of late!

Beating Bowel Cancer believes that doctors should have the freedom to prescribe the drugs for bowel cancer that they believe will benefit their patients.  This principle has particularly been applied in England over the last four years under a special pot of money called the Cancer Drugs Fund.  It has resulted in thousands of patients getting treatment that would otherwise have been denied.  The benefit to patients has been immense. I believe that, with the thousands of individuals who have benefited, we now have real world data that proves the benefits of the Fund and the value to patients.

Last week there was an announcement by NHS England that there is to be extra funding (£80 million a year) for the Fund until 2016.  This is welcome news.  Alongside this it was announced that the list of drugs under the Fund would be reviewed, to check that they reflect best practice and, crucially, to ask the drug companies to submit the evidence they now have around the experience of patients prescribed over the last four years.  Beating Bowel Cancer will be working very hard to hold all parties in NHS England and the government to their promise that bowel cancer patients will get the treatment they need. We expect that bowel cancer patients will continue to benefit from the Fund.

In the longer term, we need more certainty and to put in place a permanent solution to ensure patients get the drugs their doctors says they need.  We need an approach that ensures drugs reach patients based on a "real-world assessment" of their benefit.  We have been told that this is what NHS England and the government wish to do and their intention is to involve Beating Bowel Cancer and other charities. I have recently written about this issue in Remembering the patient in the Cancer Drugs Fund debate.

In the meantime, we will go on advocating for bowel cancer patients and making the case that they need to know all the options available to them.  What matters to us is the best possible care for bowel cancer patients.

Looking forward

A number of things have happened and are happening that have focused my mind on the future.

On a personal front my lovely daughter did very well in her GCSEs after working her socks off.  She is now at the Reading Festival (a popular place for GCSE results students I am told) and in three weeks it will be her 17th birthday.  All of which reinforces how time passes very quickly and how fortunate I am to be able to see my children grow up and mature into individuals of character.

On the Beating Bowel Cancer front we are looking to the short term future with the fantastic launch of our Decembeard fundraising campaign yesterday evening.  The event, held in London's Covent Garden was jam packed with friends and media all getting excited about our new brand and new plans and partnerships.  Watch this space, but expect bigger, better and, in the words of Theo, "watch out for Movember's hairier little brother".  I guarantee you will love it and we will raise both awareness and vital funds.

We are also looking at our charity strategy and how we are doing against the goals we set ourselves.  This is particularly important if we are to stretch our ambitions and, therefore, identify the additional need we can meet.  With this in mind I have been talking to our Finance and Fundraising Director about how we fund an expansion of our services to reach more people locally.  Making this happen will take time, but I am now sure we can add to what we already do and, in a significant way, be there when people need us even more.

On the cycling front (how can I blog without mention bikes) I am looking for my next challenge (maybe London to Paris for Beating Bowel Cancer?).  Whatever I do I would like to put a team of supporters together so we all ride and fundraise together. I hope to make something happen for next Spring. In the meantime, I will be carrying on cycling throughout the winter, which means buying good quality winter kit.

Just a few things I am thinking about of very many in my little head.  Have a good bank holiday weekend everyone.

Keep on pedalling

"Are you going to keep it up?" is the question I have been asked most after last Sunday's Ride London.  The second most asked question is "Did you enjoy it?".  The answer to the first is "Definitely".  To the second is "Not a lot, but I'm very glad I did it".

Riding 86 miles (not the 100 planned, as they closed the hills on very valid safety grounds), in what Chris Boardman called "Biblical" rain, was one of the experiences of my life.  It doesn't compare with the birth of my children, but at least this time I did all of the work!

I cannot ever forget being blase about standing in the open spaces of Richmond Park in a thunderstorm, holding a metal bike in my hands and not giving it a second thought.  And then being happy to set off again and ride through two or more foot deep puddles. Wet feet?  Not a problem.  Cold wet sprays of water in the face from the rider in front? Of course, carry on. Another 60 miles of it? Bring it on.  All in the cause of fulfilling Rule 9 in cycling (Google Velominati Rules to understand why that is significant).

Now the cycling shoes have dried out, the following are the lessons I have learnt:

• Training is everything.  It is not just about fitness, or learning to do the hills.  It is about putting yourself in a place where everything is familiar and things happen automatically.  On Sunday I found I just did things by second nature and was able to ignore tiredness, what few hills there were, and the need to stop for fuel because I had learned lessons over the Summer.
• Speed/pace is important to me.  While I was delighted with my time of 6:17 (5:44 moving time) I now wonder whether I could have done better if that is what I had worked on in training.  Of course, my focus was on simply doing the distance on the day, but...maybe...
• Smile for the camera.  There is not one picture, official or otherwise, that is any good of me on my bike. Either I look too fat (I know, lose more weight) or I am grimacing/have a determined look (you choose which).  A nice photo for the record would have been nice. That said, the one below with my family post event is a nice memory.
• Cheering crowds make you feel like a hero.  Towards the end the crowds were there and vocal. Riding up Whitehall to cheers and shouts was absolutely astounding and made me feel all warm and fuzzy inside.  If you were there - thank you.
• There is nothing like a good sports massage.  Early on Wednesday morning I awoke in agony as my neck muscles went into spasm in a delayed reaction to six hours on a bike.  Not nice and very alarming. Today a lunchtime deep tissue massage looks like fixing it.  Worth every penny.
• Plan your next event.  I am keeping going.  There is a 69 mile ride in October I am going to do.  Then there is a London to Paris in the offing next Spring and a new ride in Wales worth doing in June 2015.  And, of course, Ride London 2015 - ballot opens 18th August.

So, time to get back on the bike.  Will aim to do 20 or so miles this evening and on Sunday we are riding out to do the hills we missed on Sunday.  I am looking forward to it.

My fundraising total so far is amazing, but if you wish to help continue our work - helping those with bowel cancer and beating bowel cancer through raising awareness you can still do so via: My Just Giving Page

Partner, children, nephew and his girlfriend - the family

Done

Phew. Did it. In a tropical storm. With flooded roads and very soggy spectators watching.

The downside was they cut out the hills which means I did 86 miles. It was a sensible decision to not do the hills as the conditions would have been desperately dangerous. Coming down off Leith Hill is dodgy at the best of times. But during a storm it would have been reckless. So, well done the ride organisers.

Sorry I couldn't ride each mile for the names. If it compensates I plan to ride the hills this weekend and do so in memory of those names. I hope you understand. 

The ride was one of the best things I ever did. I can't say it was enjoyable. Who would? But I am glad I did it. Yes, I will do it again next year. Along, I hope, with a London to Paris ride at some point. Join me?  

My official time was 6:17:42 and my move time, that is time on bike, was 5:44:56. Average speed was 14.9mph with a max speed of 31.8mph. Overall I was very consistent on pace, and speeded up towards the end. My legs, the calves, were very tired at the beginning and it was a real grind keeping going, but after half way, with end in sight, I took heart from the spectators and peddled harder. It was then that I enjoyed it most. And the best bit was coming through Whitehall, past the Houses of Parliament with the crowds cheering. And yes, I did get a lump in my throat across the finish line. Any water in my eyes though must only have been raindrops! 

Thank you for all your wonderful support. Thank you for all your wonderful donations. I have raised over £5,200, which is amazing and will really help our vital work.

So, who is up for going to Paris on a bike next Spring? X