Marathon 22 done, 23 here we come…

It was my second Greater Manchester marathon. The atmosphere was amazing and although I wasn’t as fit as last year and my running was disjointed I had an absolutely wonderful time.

One thing I’ve learned from running the marathon twice, in 2015 as a fit runner going for a time and last weekend, as a more relaxed runner just looking to get round, is that marathons just hurt. Regardless of your targets for the race. When racing a marathon and going for a time you strain every sinew and try and extract every last ounce of speed. It hurts! At the end of the race last year my sprint finish was more hobbling, less running. I broke myself last year a little, but it was worth it. I knocked 38 mins of my PB and finished in 4hrs14.

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Hobbling to the finish last year

Last weekend I didn’t have the fitness to run the full 26.2 miles continuously, so it was very stop/start. I had struggled to get any momentum in training. So I strained every sinew, not to extract every last ounce of speed, but just to summon every last bit of determination (and everything else I had) just to finish. It’s amazing how breathless you get when your body is in crisis and you’re trying to place on foot in front of the other. I finished in 5hrs24 and I learned that no matter how fit or unfit you are marathons just hurt!

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With my dear mate Fay before setting off

But no matter how tough it was I never lost my joy. That was in part because of how great it is to run with my mate Fay. No matter what we always have a laugh. Even if I’m joking about the various ways in which my body was malfunctioning, the knee that went into spasm or the feet that just didn’t stop aching. There are serous things in life, like illness and the cancer treatment I’d have the day after this race. Running isn’t like that, it’s a luxury, a joy.

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Having chemo the day after the Greater Manchester marathon, my 22nd full marathon

It didn’t matter that I wasn’t in great shape. I’m just lucky to be running. In the last year I’ve lost many friends to cancer. Losing people like Ric and Max, two of life’s loveliest blokes, makes me more determined than ever to do as much as I can to raise awareness of cancer symptoms, issues and of course funds.

Lining up at any race start line is a privilege. My own cancer could stop me running at any point. I feel lucky to be taking part at one of the biggest marathons in the country for a second year. But I’m truly blessed to still be alive three years after being told I might not last 6 months. Three very important years with my three young daughters Skye 11, Isobel 6 and Heidi 3 and my wife Louise. I truly am a lucky guy!

It was great to see so many friends in Manchester during the marathon, runners and spectators alike. I was especially pleased to see John, a bowel cancer patient like me, and his wife Jude on the course. I was struggling a little at that stage and when I saw them I got a little emotional. I was reminded of why I’m running- to try and help other patients. The joint Lymm Runners and Red Rose Road Runners water station at the 8 mile marker was amazing. I have many friends at both clubs and was given a rousing reception. It gave me a huge boost and sustained me through the next few miles.

My body started to break down more and more towards the end of the race, but I always like to finish strong. Despite my physical condition I was raise my pace in the straight. Cheered on by a huge contingent from my club Charlton Runners near the end I spent every last ounce of strength, summoned my last drop of resolve and attempted to muster a finish worthy of a great bloke and like my mate Eric. He’s another bowel cancer patient and is sadly not doing so well at the moment. I dedicated my race to him and did my very best. I hope I did him proud!

I’ll definitely run the Greater Manchester marathon next year, if I’m well enough. It’s an amazing race and the biggest we have locally. It was wonderful to be greeted by people I’d never met. Very kind indeed. There was also a spectator that called me ‘Ben’s Bowel’. It’s amazing that people have heard about me and know about what I’m trying to do.

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Was pleased to have the chance to talk to That’s Lancashire about bowel cancer awareness month in the week.

This was the first of three marathons I’m running this month. Today I’m running the Temple Newsam Marathon on the outskirts of Leeds. Next week I’m running the London Marathon with Louise, my wife. It’s going to be tough, but I’m determined!

We are fundraising for three amazing cancer charities: Beating Bowel Cancer, Mummy’s Star and the Rosemere Cancer Foundation. Please click on the link to donate, any donations would be gratefully received:

http://www.virginmoneygiving.com/bensbowelmovements

Good Morning Britain and goodbye Cancer Drugs Fund…

We had positive scan results just a few days ago. It’s a great time and we are very relieved, but it’s a time when we also think about friends of ours we’ve sadly lost along the way. Friends like Ric who passed in December and Max who died earlier this year. I’m very lucky to receive treatment that works, but not everyone is so fortunate. For some people, the drugs they need are too expensive to be funded. Today I’ve been on Good Morning Britain, a great opportunity to talk about cancer drugs funding. I was excited and slightly daunted to have the chance to speak on behalf of fellow cancer patients. 
  
One of the drugs I receive is called Cetuximab. It’s a very expensive treatment that isn’t, at present, funded by the regular NHS and isn’t NICE approved. We got funding from the Cancer Drugs Fund to pay for my treatment. Now the government is looking to withdraw the CDF and Centuximab is under threat. 

  
It’s an expensive drug, but it’s changed my life. I’ve been receiving it for three years. It’s given me so much life and enabled me to achieve a great deal, like running marathons and raising money, but most importantly it has allowed me to watch my daughters grow. They are 3, 6 and 11. Heidi, my youngest, was not yet 6 months old in February 2013 when I was given 6-12 months to live. She couldn’t speak so couldn’t even tell me she loved me (I had my suspicions she did though). Now she lavishes great affection upon me and not just that, but she’s also about to start primary school in September. I’ve also lived to see my middle daughter Isobel start, and thrive at, primary school. My eldest, Skye, is about to start high school too. Huge milestones that I wouldn’t have reached without Cetuximab.

  
By the time I started receiving this amazing drug I’d been given two different courses of chemo that had absolutely no effect on my cancer and I was given my terminal prognosis. Cetuximab was probably my last role of the dice, not that my Oncologist (The Indian Uncle I Never Knew I Had) had been so blunt. It took a little while for everything to get sorted. I didn’t have long left, so we got busy using this time to make memories with my girls. We visited Disneyland Paris, took a big family holiday to Cornwall and went on lots of other lovely trips, including my girls’s first trip to the Britannia Stadium to watch the mighty Stoke City. 

 

The Indian Uncle I Never Knew I Had (aka my Oncologist)

 
It took time to get sorted out because Cetuximab is an expensive, targeted treatment, which only works for patients whose cancer has a particular mutation. Thankfully after testing we discovered mine did and although I was given a 25% chance of the treatment working we went ahead. But we could only do that after we’d secured funding from the Cancer Drugs Fund.
My life and those of my beloved wife and girls would have been much different without Cetuximab and the Cancer Drugs Fund. But sadly, at the moment, it looks like the Cancer Drugs Fund is going to be withdrawn. It’s unclear what is going to replace it and whether funding for expensive cancer drugs will be available.  My treatment is secure, because I’m already receiving the drug, but others diagnosed after me might not be so lucky.

 

Great to meet Good Morning Britain presenter Sean Fletcher today

 
One of the main reasons the government is looking to withdraw the Cancer Drugs Fund is because there’s been an overspend. More money has been spent on cancer drugs than was allocated. But surely that’s an indication of success? If more people are accessing the Cancer Drugs Fund then were budgeted for than doesn’t that demonstrate how necessary it is? Instead of shutting it down the government should be investing more.

 

Cheeky rum along the Thames this morning before our interview

 
They can save money over the long term by working hard to do more to raise awareness of cancer symptoms, so that more people are diagnosed earlier. The earlier a person is diagnosed the less treatment they are likely to need, therefore making it more likely they’ll be cheaper to treat. If the government can do that and we can take personal responsibility for our own health, making use of screen where its available, they won’t need to spend as much money on expensive drugs. But right now they need to fund drugs and raise awareness.
 

Great fit in some time at the hotel gym too!

 
Who knows what the government will decide to do, but it doesn’t feel right that drugs, which are proven to give people extra life, might be cut. I’ve had three years of extra life, but it’s not possible to put a price any extra time a drug could give to a terminally ill cancer patient. Even one extra month could mean a person reaches an important milestone, like an anniversary, a graduation, a special birthday or an important family time.
It’s a really important issue and I’m really pleased I’ve been given the chance to speak up for my fellow patients. Our friend Mark Flannagan, the CEO of Beating Bowel Cancer was on the sofa with me and it was really great to share my experiences.

  
 Thank you to everyone who sent us messages of encouragement. I had a restless night’s sleep and your kind words were humbling and a great source of reassurance. 

The catch up link is active for the next few days. We are on at roughly the 1hr48 mark:

http://www.itv.com/hub/good-morning-britain/2a3211a1726

Scanxiety

Scanxiety: Noun [skan-zi-etee]: Uneasiness waiting for ones scans after cancer treatment (thanks to Heather Von St. James for providing a succinct definition).

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Love my family. Us with the Mayor of Preston, Cllr Margaret McManus

I think it was my friend Julie that first made me aware of this term. Up to then I’d always thought it was just me that got ridiculously anxious waiting for scan results. It doesn’t matter how positive I am or how much I do to distract myself I’m still vulnerable to doubts and worries ahead of finding out if my treatment is still working.

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Louise and I got very muddy at Tough Mudder. It’s all in the name I guess.

It’s silly really over the last 34 or so months, since my treatment started working, I’ve had probably 10 scans all of which have shown that my cancer is stable and hasn’t spread. Recently though a courageous cancer affected little lymph node has been gradually increasing in size and has doubled over the last year. Courageous, because while it has carried on getting bigger, it is in a cluster behind my vital organs and has doggedly clung on to all cancerous cells it contains. It hasn’t bothered any of its friends, by allowing the cancer to spread.  Despite the fact my treatment has still been effective, waiting for results just never gets any easier.

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I’m really proud of all I’ve achieved, but I couldn’t have do any of it without the amazing people at Rosemere!

 

In the past getting bad results have left me in a state of shock and shaken the very foundations of my existence. When Louise and I were told that my second course of chemotherapy hadn’t worked and I wouldn’t be cured my hopes and aspirations for the future evaporated in an instant. I worried a great deal about my wife and three young daughters. For a few days, at least, I was sunk. It was horrible and those feelings never really leave you. Like most emotional pain it dims over time, but rears its ugly head from time to time.

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Proud of my eldest, Skye, walking Snowdon with us!

I suppose there are some parallels to be drawn between cancer scan results and running. In sport and with cancer; results are the ultimate reckoning. Running in a race can be tough. When you’re running at your limit, any niggling little injuries or lack of training is exposed. The clock never lies. But scan results are even less compromising. Just like running everything you’ve eaten, all the exercise you’ve taken, the chemo sessions you’ve put in all come out in the scan report. If you get bad scan results your treatment options at best change, or at worst decrease. There’s always an another race, another training cycle in running. But scan results are new, final and definitive.

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Marathon medal number 21 🙂

I’ll try and concentrate on the positives though. Since June 2013 my treatment regimen of Cetuximab and Irinotecan has been working. Since that time I’ve run 21 full marathons, including three ultras (and numerous halves and 10ks). In September I also tackled an 11 day 500 mile Scotland to Wales National Three Peaks cycle and Tough Mudder Challenge.

 

It’s perverse, but even with terminal bowel cancer I’m in the best shape of my life. I go to the gym on average 3 times a week, run 3-4 times a week and try and fit in a cycle ride here and there too. In a way cancer has been great for my sporting career and great for my fitness. Facing my own mortality has made me tougher and more motivated than I’d ever thought possible. I often wonder if  my pre-cancer self would recognise me now.

And this last course of treatment has gone well. I’ve not taken any breaks for races. My body has coped admirably with the side effects and my blood levels have remained good throughout. I feel strong and healthy, so really it’s hard to imagine anything bad coming out in the scan results.

Fingers crossed. Hopefully all our prayers will be answered and we’ll get positive scan results that show stable disease and allow me to carry on with treatment.

 

To read more about scanxiety and coping:

http://www.mesothelioma.com/blog/authors/heather/scans-anxiety-scanxiety-my-biannual-checkup-in-boston.htm#ixzz43WkOpo8J

http://www.curetoday.com/community/tori-tomalia/2015/02/10-tips-for-coping-with-scanxiety

 

Ben’s Bowel Movements on facebook: facebook.com/6marathons6months

I’m on twitter too: @ChemoDadRuns

 

Lets do it for Ric!

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Cancer is cruel. This week we lost one of life’s true greats.

Ric Clark was a dear mate and a fellow cancer patient who sadly passed away on Wednesday. We were both treated at the Rosemere Cancer Centre at Royal Preston Hospital and bonded over our love of running and our determination to give something back and fundraise for the Rosemere Cancer Foundation​.

Ric was an incredibly warm and cheerful man. I didn’t know him very well, but he taught me a few things about dignity and serenity. Whenever I saw him he was always so upbeat, no matter what he was going through and dealt with. My thoughts go out to his family, especially his wife Leonie and two lovely boys.

In the days since he died I’ve been thinking of the best way to honour him. To me and many others Ric was a superhero, but he was also a fan of superhero movies too. Tomorrow we’ll be wearing superhero shirts as we run and cycle 50 miles, including twice round the Guild Wheel, and it’d be great if as many of you as possible could do the same at the Cheeky Santa Dash​.

Hope to see loads of people wearing Captain America clothing, Superman sweaters, Hulk hats, Thor t-shirts, Batman bandanas or whatever you’ve got you. It’d be great to think of Ric looking down and chuckling at the state of us.

Cheeky Santa Dash on Facebook

Ben’s Bowel Movements on Facebook

We are raising money for three amazing cancer charities. The Rosemere Cancer Foundation, Beating Bowel Cancer and Mummy’s Star. To donate please click

 

Wow- I’m the Captain of Lancashire

12009608_887213234699232_2597890301262233102_nI’m overjoyed to be the Lancashire County Captain for the Great Yorkshire Run this morning. It means even more, because the readers of my local paper, the Lancashire Evening Post voted for me.

I’m a very proud Lancastrian (but one with a love of Yorkshire and a wife from Leeds) and when the t-shirt with a huge Red Lancashire Rose and the words County Captain Lancashire arrived I got goosebumps. I can’t wait to get out there and represent my county later!!

Thanks to all those that voted for me!! 🙂

Been feeling under the weather the last few days. I have been fighting an infection for more than a week which has been causing tiredness and a little pain. I’ve had my PICC line taken out, so feeling much better and hoping I can lead the Lancashire runners to victory.

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The before photo. I’ve been fighting an infection in my PICC line for almost two weeks. It was causing a lot go pain, so I was relieved to have it taken out…

...and it's out

…and it’s out

...at least now my arm has a chance to heal

…at least now my arm has a chance to heal

Day 9 Chester to Llanberis, my last day of cycling

It’s a huge day. I was nervous and a little apprehensive when I started this challenge more than a week ago. I wondered whether I’d made it to this stage and my final day of cycling. There were two mountains and 6 hard days of cycling to get through first.

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After Ben Nevis on that first day I was a lot more tired than I expected to be. I though riding through the highlands the day after would take it’s toll. But while it was hard my friend Tim got me through. With each passing day my tiredness had increased. I seem to have been going to bed earlier each day and greedily consuming sleep until there are no hours left and it’s time to wake and prepare for the coming day.

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I’m tired for sure and I’ll have a good rest on Sunday night after the Northwest Tough Mudder, but before then I’ve got today to get through. The ride from Chester to Llanberis is a hard one, the toughest of my 7 days of cycling, by a margin- 60 miles with almost a full mile of ascent! I wondered whether I’d make it to this stage, but here we are and I can’t quit now!

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My epic 11 day National 3 Peak Cycle and Tough Mudder Challenge:
https://bensbowelmovements.com/my-next-challenge/

We are fundraising for three brilliant charities Beating Bowel Cancer​, Rosemere Cancer Foundation​ and Mummy’s Star. To make a donation:
http://www.virginmoneygiving.com/BensBowelMovements

Day 8 and the cycle to Chester…

Apologies for not updating this recently. It’s been a tough last few days. Day 5 and the cycle to Ambleside was hard. After a stop off at Keswick and the Pencil Museum (as recommended by Graham Liver on Radio Lancashire) I struggled on the hills leaving the town. It was a very hot day and we were quite exposed on the hillside. It was frustrating to give up on the initial ascent, but after a quite break I got back on my bike and made it second time around. The rest of the day was straightforward and we got to Ambleside for a well earned drink (coffee in my case). IMG_9383

Day 6 was the climb up Scafell Pike, England’s highest mountain. The day started badly as we arrived more than 90 minutes late, but improved and we met lots of very interesting people along the way.

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I was absolutely exhausted, almost dead on my feet after the climb up. Having been at this 6 days I was beginning to feel worn out. But as I said it was a fab day though and I had lots of support. Walking were my Mum, Stepfather Martin, friends Gwyn and Kenny and the amazing Gemma and Nancy from Beating Bowel Cancer travelled all the way from London to join me. Just shows what a great charity they are. Really fortunate to have such support!

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Really glad of Rachel from Macmillan Cancer Support​ based at Rosemere for her and Janet’s help at the start and much needed water and snacks at the end!

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After Scafell began three days of cycling. Ending in the hardest day I’ll face on bike, foot or mountain- Chester to Llanberis.

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Yesterday though, it was Ambleside to Preston. I was really looking forward to cycling home. I expected it to be a fairly straightforward ride, but I guess nothing is when you’ve been on the road so long and I was very very tired at the end of day 7!

The day started off with a category 4 climb in a fairly hilly section as made our way out ofthe Lake District. I was struggling a little, especially given I was experiencing a stoma blockage too, which really hurt. It all worked out though. The pain subsided a little and the terrain leveled out. Our progress was curtailed a bit when I lost my bike lock key. Found it later in the stitching of my gilet?!

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After a brief stop off for a phone interview with Caroline Robertson from BBC Radio Cumbria I had a lovely chat with my Twitter friend Sandra who had waited patiently on our route. We then ploughed on until the Rosemere Unit where I’m treated at Royal Preston Hospital. It’s a little like a second home and if it is a home of sorts, then the people there must be family and that’s how they feel.

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I was able to see some of the nurses and Dr Saif, a former Registrar of my Oncologist. He treated me when I was in hospital in January and I appreciated his straightforward approach and kind bedside. A true gent and an excellent doctor!

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Before leaving I had a nice chat with a fellow patient David, who also made a donation. Having the support of Doctors, Nurses, staff, volunteers and patients really validates what I’m trying to do and gives me a massive boost!

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Getting home to Louise and the girls was great. Loving being at home. Won’t be long until I’m home for good! 🙂 Thanks to Chris for riding with me and again Alan for his unwavering support and logistical nous.

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Day 8 today and the cycle from Preston to Chester. To see the rest of my epic 11 day National 3 Peak Cycle and Tough Mudder Challenge:

https://bensbowelmovements.com/my-next-challenge/

We are fundraising for three brilliant charities Beating Bowel Cancer​, Rosemere Cancer Foundation​ and Mummy’s Star​. To make a donation:

http://www.virginmoneygiving.com/BensBowelMovements