On The Wright Stuff today/ RIP Eric

Louise and I are looking forward to appearing on The Wright Stuff later this morning. We’re always grateful for the opportunity to share our story and try and help others by promoting awareness of bowel cancer and symptoms by talking about our experiences of living with the disease. 
Early diagnosis is crucial with all cancers, especially bowel cancer. In 90% of cases patients can be completely cured, if bowel cancer is caught early enough (Read more about bowel cancer symptoms). We hope that by talking about our cancer adventure we might make others aware of the symptoms. If we manage to reach just one family and help stop them going through what we have, then we’ll have succeeded.


We met Matthew Wright at Beating Bowel Cancer’s parliamentary reception in January he’s a lovely bloke who’s done a lot to promote awareness of bowel cancer and symptoms. It’s great to see someone with a public profile using that platform to do so much good. 


But sadly while we are really excited to meet Matthew again and go on his show it’s going to be quite a bitter sweet experience for us. 


The same afternoon we met Matthew in January we we also met a lovely couple Eric, a fellow bowel cancer patient, and his wife Jean. Eric and I bonded over running and our experiences of bowel cancer. At the time Eric’s disease was advanced, but his spirit was undulled and he was just so positive. Eric inspired me with tales of his running adventures. He was unable to run himself, so in April I dedicated the three marathons I ran to him. I also wanted to run the Snowdonia Marathon this year for him. Eric took part in the race years ago and talked enthusiastically about it. Unfortunately, cancer intervened and I had surgery instead. 


We kept in touch and he started a new treatment, which seemed to work for a while. He battled bravely for months and even as his health began to deteriorate his positivity held strong and he enjoyed a lovely early Christmas with his family. He sadly passed away last month. Jean had messaged me to give him a call, but I didn’t get there in time. Cancer is cruel! I’ll miss him loads. 


God bless you Eric. If I run one marathon next year I hope it’s Snowdonia. You provided such a great example to me and should my health fail I hope I’m as positive and dignified as you buddy.

Joy…

Wrote this on Monday while having treatment. I felt really euphoric and grateful…

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Sunrises like this make running at 5am worth it

Can’t beat this feeling. I’m sat having chemo watching some of my favourite music videos on Youtube. I’m enjoying a nice sleepy buzz from the from the huge dose of Piriton I had earlier. They give it to me to stop me having an allergic reaction to the treatment. It knocks me out and I often joke that the nurses administer it just to shut me up.

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The nurses at Rosemere are amazing!

It’s a gorgeous day outside, but I’m not sad to be indoors. The windows are open and there’s lovely  gentle breeze blowing softly in. The atmosphere in the chemo room feels light and airy. It’s a joy to be here. I’m sleepy and could feel vulnerable, but I’m safe and cared for. I love spending time with the nurses. They never stop smiling. Who wouldn’t want to spend time amongst such cheeriness. I also don’t mind being here, because it feels like I’ve already done my work today. This morning, before treatment, I ran 6 miles and have been to the gym. It’s always important to me to fit in exercise before chemo, because it might be a few days before I can do it again.

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Such a beautiful sunrise. I love the peach and orange hues

This morning felt extra special though. I usually run at 5am with my friend Simon. Running at this time of day we’ve seen all kinds of weather, especially in the winter when it’s so dark I’ve used a head torch. Just as it was starting to get light again the clocks changed and plunged us back into darkness. We’ve not been for an early run recently, so it was a surprise to be running in sunlight all of a sudden. This morning’s sunrise bathed the world in a beautiful warm, deep orange glow. It was a joy to experience the world as it was waking. It felt like God crafted such a breathtaking sunrise just for us. There were lots of people around later in the morning when I was on my way back from the gym. I was stopping to take photos while they went about their mornings travelling to work and school. I couldn’t believe it that no one else was stopping to appreciate this daily miracle.

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Love running with my buddy Simon

That’s the great thing about retiring from work on ill health grounds. I’ve got the time and opportunity to appreciate the commonplace. I guess it’s also the cancer and the connection I have with my own mortality. It’s not unusual for people who’ve had their existence threatened to find joy in creation and the natural environment. The musician Wilko Johnson was diagnosed with pancreatic cancer around the same time as me back in 2012. He has talked about how he’d never felt as alive as when he’d been told he had incurable cancer. A self confessed ‘miserable so and so’ all his life, he felt intense elation when sunshine hit his face as he left hospital upon hearing the news.

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Even when you’ve been told you have cancer and may die there’s still so many things to be grateful for. That was definitely how I felt 5 mins into my run yesterday. It had been a rotten day. For most of it I’d been struggling with pain from a blockage in my stoma. I’d missed an exercise class I’d been looking forward to for ages and a lunch with friends. I was in a stinker of a mood and was getting cross with my family, so I took myself off for a run after dinner. It was a lovely evening, the sort to be enjoyed with a nice glass of wine, but instead I was out running. It was exactly what I needed. Running in the sunshine melted away all my grumpiness. And as the light started to fail the sunset was just as breathtaking as today’s sunrise. It was a joy to behold. I felt like God knew I was in a funk and put the sunset there to lift my spirits.

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A breathtaking sunset on Sunday.

Finding joy in the banal and everyday, like a sunrise or sunset is what I try to do these days, there are so many blessings to count. Even if it rains the rest of the week at least I’ve had a lovely day today with a warm, sunny blanket wrapped around me during treatment. I’ve also had great company from nurses and fellow patients, some beautiful sights to appreciate and the energy to run too. I feel fortunate.

 

We are fundraising for three amazing cancer charities: Beating Bowel Cancer, Mummy’s Star and Rosemere Cancer Foundation. Thanks so much for all your donations so far.

Please click on the link to donate, any donations would be gratefully received:

http://www.virginmoneygiving.com/bensbowelmovements

I’m on facebook: facebook.com/6marathons6months

First DNF, but still having new experiences…

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Just about recovered. and getting serenaded by the blokes in the van.

Whenever they ask at the hospital or pharmacy if I’m alergic to anything I always say ‘no, but I’m open to new experiences’. Louise has long since tired of my daft jokes, but I just carry on telling them regardless. They’re like a sort of defence. A way of coping with all the medical hullaballo and  showing I’m still buyoant and meeting all the challenges cancer throws at me. Mind you, I don’t know  what I’d do if I actually discovered an new allergy.

But life throws lots of things our way and we’d find it harder to cope  if we didn’t have a sense of ownership. Being able to achieve any sort control is important, even if it’s only an illusion.

The same applies to our appointment this morning with the surgeon who’ll be operating on my liver and to a lesser extent the marathon I didn’t complete  yesterday.

It’s my first DNF, the first marathon I Did Not Finish, so one of those new experiences I joke about. At around the 3 mile mark. I had agonizing abdominal spasms and had to stop. It was very frustrating, but it was the right decision- I couldn’t carry on. I sat on the grass by the docks in Preston and struggled to speak. It must have been  worrying for my mate Sam who was running with me.

Eventually the pain lessened and I was able to walk to meet Louise who’d come to picked us up. I’ve had stomach cramps like this before, so I don’t think it has anything to do with the cancer in my liver. It’s a strange, the pain spreads throughout my abdominal muscles and winds me. It’s never happened during a marathon before, but I’m glad Sam was wih me.

My stomach muscles still feel a little a little vulnerable. There’s a twinge there and I’m not sure whether I can trust my body. I’ll take it easy though. I won’t be hammering it in the gym until I’m right again.

But running isn’t life or death and our visit to Royal Blackburn Hospital this morning is far more important.  We’re both pretty nervous. It’s our first meeting with the surgeon. It’s been more than three weeks since we found out my cancer has spread. It feels like a long time to wait before speaking to someone about surgery. But we feel lucky I’m able to have surgery and it’s going to be great to get some answers today.

 

Waiting for our appointment.

It’ll be my third surgery, but my first since I  started running marathons. It’ll be another fab first. I hope to recover more quickly than my last surgery four years ago. I’m tougher, fitter and stronger than ever before and what a great experience it will be to run a marathon once I’ve mended.

We are fundraising for three amazing cancer charities: Beating Bowel Cancer, Mummy’s Star and Rosemere Cancer Foundation. Thanks so much for all your donations so far.

Please click on the link to donate, any donations would be gratefully received:

http://www.virginmoneygiving.com/bensbowelmovements

I’m on facebook: facebook.com/6marathons6months

…and twitter too: @ChemoDadRuns

Marathon 24; London here we come…

Today Louise and I run our second London Marathon. We are very excited to be doing what thousands of runners dream of and what I personally grew up hoping to tackle. It’s a wonderful opportunity and we’ll savour every step we take.

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Me and my beautiful family

Sadly, though we are running it under different circumstances to those we originally envisaged. We received some bad news last week. A scan we had, to investigate the possibility of radiotherapy, has revealed growth in my disease. There’s a tumour on the scar tissue from my previous liver op.

There was also a hotspot in my bowel, but I had a sigmoidoscopy (camera up my bum to look at what’s left of my bowel) in the week and it looks clear. It’s not all bad and as I’m so fit our oncologist (the Indian Uncle I Never Knew I Had) is pursuing surgery, which I might not have had otherwise. There’s always a positive to be found!

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At the gym after my sigmoidoscopy 

It’s a been a bit of a shock, but we’re feeling very optimistic. It’s funny how in an instant I’m suddenly not bothered about my aching post-marathon legs and blisters. Also, we are very lucky to have had the scan, which showed up this tumour. PET CT scans are expensive and the last one I had was more than 3 years ago. This type of scan shows up everything and we could have discovered I was riddled with new tumours, so this is a great outcome. How blessed we are to have found this tumour at an operable stage!

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This is just a bump in the road. I’ve always been aware that something like this could happen, which is partly why I’ve worked so hard to get stronger and fitter. My fitness will help me recover from surgery and if my body burns off all my muscle as I mend, then I’ll just build myself up again.

We are positive, but it’s still put an entirely different complexion on this weekend. Not just that, but our whole lives too. The day after we get back from London I’ve not only got chemo, but an MRI scan as well. This scan will give my surgeon more detail ahead of my operation, so it’s very important. Hopefully soon after we’ll get a date for surgery.

Getting this news hasn’t altered my immediate plans. I’m feeling great and I’m not in any pain. I ran a marathon last weekend and I’m obviously running the London Marathon too. There’s plans to run another marathon in May and I will carry on for as long as I can until the surgery. Afterwards, I’m hoping to make as speedy a recovery as possible, so I can resume my fitness activities and challenges as quickly as possible. 

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In a way the London Marathon now serves a different purpose for us. Two or three weeks ago we were relishing the challenge of running our second London Marathon, it’s also one of the highlights of our fundraising year. We are still excited, but it now provides us with an opportunity to escape some of our worries. At least for a day.

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Not really my pace band, but couldn’t resist a joke

It’s going to be a blast just running London together. It’s a great race- as much a celebration of causes and humanity as running and there’s no one I’d rather share it with than my beautiful wife Louise. These last few years have been hard and the last couple of weeks, in particular, have been some of the toughest we’ve faced, but Louise continues to share her joy with us, her family. She keeps us afloat, both emotionally and practically. She does an amazing job of looking after the girls and I. It’s not easy, I’m in bed 3-4 days every fortnight recovering from chemo. But despite the difficulties we face an infectious smile is never far from her face.

She’s the love of my life. She’s clever, beautiful, kind and hard working and I can’t for the life of me see what she sees in me. Perhaps if I don’t tell her, she won’t notice.

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Love Louise!

The London Marathon is my third and final marathon of April. We are fundraising for three amazing cancer charities: Beating Bowel Cancer, Mummy’s Star and Rosemere Cancer Foundation. Thanks so much for all your donations so far.

Please click on the link to donate, any donations would be gratefully received:

www.virginmoneygiving.com/bensbowelmovements

I’m on facebook: facebook.com/6marathons6months

…and twitter too: @ChemoDadRuns

Dead last is greater than did not finish…

There’s a maxim that’s popular amongst runners it goes “dead last is greater than did did not finish, which trumps did not start”. My 23rd marathon brought this to mind yesterday. The Temple Newsam marathon was tough and, as my interest in this quotation implies, I finished last. That was a first for me. In a way it’s nice after 2 years and 23 marathons to still have new experiences, but it still hurt and it taught me a valuable lesson.

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About to start

 

It took me 5hrs55 and I struggled! A lot! It was a really undulating trail marathon, so a lot different to the pancake flat city streets of Manchester last weekend. Soon after the start today I knew I was in trouble, but I managed to dig in and stuck at it doggedly until I was done.

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That I finished at all has a lot to do with Helen, the tail runner. She accompanied me throughout the race. Having company on a long run is great. It raises you spirits. It’s not for nothing that Alan Sillitoe wrote his famous story, “the Loneliness of the Long Distance Runner”. Running is a solitary experience and it can be very hard on the mind, especially when things aren’t going well.

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When the race started my legs felt heavy. I tried running for a few minutes, but there was nothing there, no energy and no spring in my step. As I began to walk, and was passed by the only runner behind me, my heart sank a little. My expectations for the race changed. I had wanted to get around in a decent time, while maintaining my streak of not finishing last in a race, but this switched in an instant and I was forced to rethink my plan.

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This streak was something I took a lot of satisfaction from. No matter how much I’ve been battered by treatment or how tired and weary my body has been, from running and training in the gym, I always managed to finish in front of others. I was very proud of this. But from an excess of pride comes arrogance and hubris. I have always tried to be humble about my achievements, but where running is concerned perhaps I’d started to feel entitled, like I was too good to finish last.

 

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I was sad when that runner passed me, but now I’m pleased for him that he did and stayed out in front. He was better than me. It was a great reminder not to take myself too seriously. I’m no better than anyone else. There probably aren’t many people running a marathon a month alongside chemo every two weeks. But that doesn’t mean anything at all in a race. Not one thing!

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With Helen after the race

I might have finished last, but I made it back before the 6 hour cut off for the race. It was by no means my slowest marathon and if I’d entered a bigger race with more participants there would have been hundreds behind me. But I wouldn’t have learned anything about myself or gotten to meet and spend almost 6 hours with Helen, a lovely fellow fitness nut and optimist. We had a great laugh. Besides, if I wanted not to be last I could train harder, or run fewer marathons. No one gets anything for free and as Oprah Winfrey has said: “running is the greatest metaphor for life, because you get out of it what you put into it”.

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Getting a lovely post race massage from my talented daughter Isobel

Anyway it’s onwards and upwards to the London Marathon next week. A truly wonderful race and I’m very excited to take part for second year with my lovely wife Louise. I’ve not run marathons three weeks in a row before. Chemo every fortnight makes running hard and I’m pretty much running at my limit. Last weekend was tough, yesterday’s race was tougher still, but I’m determined!

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Running London with Louise in a few days. Can’t wait!

Thanks so much for all your donations so far. We are fundraising for three amazing cancer charities: Beating Bowel Cancer, Mummy’s Star and Rosemere Cancer Foundation.

Please click on the link to donate, any donations would be gratefully received:
www.virginmoneygiving.com/bensbowelmovements

 

I’m on facebook: facebook.com/6marathons6months

…and twitter too: @ChemoDadRuns

 

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