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

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

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

 

Hooray for chemo?

I started writing this a couple of weeks ago when I was recovering from treatment. It’s funny reading it back the morning of my scan results. I have a bit of a love/hate relationship with chemo. It’s horrible stuff. It’s really nauseating and tiring and after more than 50 doses I occasionally find it difficult to feel happy about going for treatment. On those occasions I’m really grateful for the nurses who soon perk me up:

Nafisa treated me last time.  I'm so grateful for all the care the nurses at Rosemere give me.

Nafisa treated me last time. I’m so grateful for all the care the nurses at Rosemere give me.

I always seem to forget what chemo is like. It’s probably a measure of how much we manage to pack into the time between treatments, but it’s always a surprise how much it knocks me out. I don’t think I dwell too much on treatment and how nauseas and tired it makes me. If I did I probably wouldn’t want to go. 
I ran to the hospital for the last dose of chemo from that course. A novel way to travel ;)

I ran to the hospital for my chemo appontment. It was the final dose of my most recent course of treatment. I’ve never run to have treatment before, but I always run the morning before chemo. It was a novel way to travel 😉

I ran to the hospital for my chemo appontment. It was the final dose of my most recent course of treatment. I’ve never run to have treatment before, but I always run the morning before chemo. It was a novel way to travel 😉

I was really frustrated this week. Being stuck in bed for days is tedious. I’m an active person and when I’m not stuck in bed I’m out running, cycling and lifting weights in the gym. I know how lucky I am. I probably get more exercise than anyone receiving cancer treatment has a right to expect, so I should probably be more laid back about not being able to train. I should be more kind to myself, but I know my level of activity gives my cancer a battering. According to Macmillan’s Move More report, bowel cancer patients that get 6 hours moderate intensity exercise a week can reduce their risk of dying from the disease by around 50% and, generally speaking, the fitter I get the more I can tolerate chemo. I know exercise helps me, so I feel extremely motivated to train as often and as hard as I can. There is a fine line between dedication and obsession though and this week in my frustration I may have lost sight of where it is.
I was out running and going to the gym days after I wrote this. I should have had more patience with myself!

I was out running and going to the gym days after I wrote this. I should have had more patience with myself!

I think anyone would feel the same. It’s great having the chance to watch movies and TV shows, but there’s only so much you can watch before you start to go bonkers. I wonder how other cancer patients manage. 
I love the running and the beautiful sights I get to see when I'm out pounding the streets. It's one of the things I miss when I'm in bed after chemo.

I love the running and the beautiful sights I get to see when I’m out pounding the streets. It’s one of the things I miss when I’m in bed after chemo.

No matter how difficult or annoying it is for me it’s much harder work for my family, especially my wife Louise. It’s not easy for her caring for me as I languish in bed. I lose count of the number off times she makes the trip up and down the stairs bringing me food, drink and helping me to feel less isolated during my time convalescing. She has a job and three children to feed, take to nursery and two different schools and extra curricular activities. It’s a struggle for and I honestly don’t know how she manages. When I rise from my slumber she’ll apologise for the state of the house, but I just think It’s amazing how she’s kept us going and all fed and the girls in clean clothes each morning.
She’d never say or even suggest it, but I still feel a bit of a burden. I also worry about the impact my being in bed has on the girls. It can’t be easy for them to see me in bed and so weak. 
Ran my 15th marathon yesterday. Feel so lucky to be able to run! I hope my results are good, so I can plan more marathons!

Ran my 15th marathon with my friend Fay yesterday. Feel so lucky to be able to run! I hope my results are good, so I can plan more marathons!

It is funny reading this back today of all days. I don’t think cancer treatment is something anyone ever actively enjoys. It’s interesting to read back and see how frustrated I get sometimes and how worried I get about the effect it has on my family, but as I often say chemo is better than the alternative. Sometimes I don’t want to go for treatment, but I know how lucky I’ve been to have treatment options and I’ll never complain about having chemo. Lots of people would love to be in my situation and be receiving treatment. It has prolonged my life. Our Oncologist gave me 6-12 months to live 28 months ago, in that time I’ve done so much. I’ve run 15 marathons and with our friends and family we’ve raised more than £30,000 for charity, but the best thing of all has been celebrating two birthdays with all three of my daughters. I’ve lived long enough to have lovely, proper conversations with my youngest, see my middle daughter start school and my eldest approach the end of primary school. I know that treatment (and my exercise) has given me so much more life. If this is my life- to go for treatment every fortnight I’ll happily take it.
Out for a walk with my girls. My eldest recently took off the stabilisers on her bike. Very proud!

Out for a walk with my girls. My eldest recently took off the stabilisers on her bike. Very proud!

I may have the occasional grumble or frustration with treatment and side effects, but right now I just want to hear the news that my scan results are positive and that my cancer hasn’t grown or spread. I yearn for nothing more than the opportunity to have more treatment. No matter how tough treatment can be booking my next chemo appointment is going to be fantastic.

Berlin marathon aka new PB or bust…

It’s been a funny week. On Tuesday I had a great 5 mile run, an uplifting prayer meeting with some of the guys from church, then back home and straight into the morning routine with the girls. Tried to make the most of it. It’s the last morning we are going to have together for over a week.

Had a lovely walk to school with Skye. We always have such a laugh and sing songs. I’m really going to miss her and her sisters when we are away. Before heading home I went to the gym for a great pre-Berlin weights session.

I’m excited about the marathon, but I love my girls. Time away from them while I’m running these races could prove a little counter productive. If my health should fail I don’t want to regret spending time taking part in marathons, when I could have been with them. I need to make sure every time take my place at the start line I give it my all. That’s what’s going to happen in Berlin. I’m going to leave it all on the course. I can rest when I’m done.

The afternoon was packed with an interview with the lovely Rachel Hurst from Lancashire Evening Post, a much needed catch up with the always patient Gemma Ali from Beating Bowel Cancer and then an unexpected trip to Salford and the ITV studio of Granada Reports. We were chared by all we met and had a real blast. We were worried about talking over each other and coming across as a bickering couple, but it passed without incident.

To see us not fall out (for once) please follow the link: http://goo.gl/KgYGop

Had a wonderful time at Granada reports

Had a wonderful time at Granada reports

Didn’t then get much sleep as we hadn’t packed or even bought currency. Thank heavens for our mate Dan who drove us to the airport. In the past few days in Berlin we’ve had a great relaxing time. Just what Louise and I needed. We’ve seen some amazing things, meet some wonderful people and spent valuable time with friends and family that have travelled. Including my brother Will who’s been away in the States for months. I’ve missed him a great deal!

Berlin is an amazing city. So lucky to be here!

Berlin is an amazing city. So lucky to be here!

I registered at the marathon expo and got my race number on Friday. There’s lots of stalls promoting sportswear companies, other marathons on the calendar and many other aspects of running. It was huge and occupied the whole of the old Nazi era Templehof Airport. On the way the most amazing thing happened.

As we were leaving the subway Louise and I were chatting about my fitness challenge and running 6 marathons in 6 months, despite constant chemo for terminal bowel cancer, when I heard someone from behind me asked if I’m Ben. It was surprising to say the least and totally amazing!

It was cool to be recognised in the street all the way over here in Berlin. I know I’m not really famous, but it feels in some small way that I might be making a difference, that we are reaching people and we might really be helping to get the message out about bowel cancer. The extra Facebook likes we’ve gained this week is only going to help us carry on this work.

Lindsey and Leona are from Chorlton Runners, a running club I have no connection to, but have been supporting me ever since I setup my Facebook page. I heard a while back that they had runners at Berlin, but the idea that we’d actually find each other amongst thousands of others is amazing.

 

Amazing to bump into Lindsey and Leona

Amazing to bump into Lindsey and Leona

Today is the last of my 6 marathons. I’ve run a marathon a month since April. Now it’s the big one… Berlin! I’ve worked hard for this. I’ve had chemo throughout and it’s been cruel. My body has been battered with cancer fighting toxic drugs, but I’ve carried on training. I’ve never lost sight of my goal.

So much has happened since my cancer adventure began

So much has happened since my cancer adventure began

Berlin is a great course and I’ve got a decent chance of running a personal best (anything under 4hrs50 would be great) but whatever happens I’ve done well to get here.

Last year we thought my cancer might kill me, but this year with the help of everyone around me I’ve been fighting hard. With each training run and gym session I feel like I’ve been clawing my life back and gaining fitness. And not just so I can run marathons, but to help me get as strong as possible, so I can fight cancer for as long as possible. I love my life and I’ve no intention of giving it up easily I’ve too much to live for. I want to carry on watching my daughters grow!!

I can’t wait. It’s going to be great!

Ben’s Bowel Movements. Running 6 marathons in 6 months in support of Cancer charities:

Giving page:
http://uk.virginmoneygiving.com/BensBowelMovements

Facebook:
Facebook.com/6marathons6months

I’m on twitter too:
@ChemoDadRuns

Time and making the most of it

It’s amazing to think that I’ve outlived the life expectancy I was given when we received my terminal prognosis in February 2013. I was given 6-12 months and now I’m 7 months past that. It feels great to have what is in some ways extra time, but it comes with its own pressures. In my situation, living with terminal cancer, trying to make the most of time is very important. People tell me that all the time and to be honest I generally try to live that way.

 

Love my princesses!

Love my princesses!

This theory is sound, but in practice it’s much more difficult to achieve. It’s not easy packing as much into life as I can. Much of my time I spend in bed recovering from chemo. Lately, my side effects have been unkind and I have been more poorly than usual. This is hardly time spent living life to the full. But even if I was packing as much into each moment as I can, how do I make sure I’m living life to the full anyway. What is the measure of a life well lived? Such things are impossibly subjective. Besides, going out and living life to the full is quite selfish. I’d inevitably end up doing things only I, and not my family, want to do. I’ve already done this with my fitness challenge.

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Running is an inherently isolating and quite selfish pursuit for a father of three with terminal cancer to undertake. I hope the girls understand in time why I’m doing this.

Running so many marathons is quite a self-centred activity. I’m trying to do lots of good by trying to make my family proud, raise money for charity and awareness of Bowel Cancer, but I wanted to attempt to run 6 marathons in 6 months, because I wanted to challenge myself and achieve something memorable. My family and friends have given up whole days to cheer me on and help me in various ways and I’m very lucky.

I've had lots of support from my family while I've been running marathons.

I’ve had lots of support from my family while I’ve been running marathons.

An existence fixated on living life to the full could become quite hedonistic and devotion to pleasure has never appealed to me. Anyone that works so hard trying to enjoy themselves can’t be having much fun. Victor Frankl said: “Happiness cannot be pursued; it must ensue, and it only does so as the unintended side effect of one’s personal dedication to a cause greater than oneself or as the by-product of one’s surrender to a person other than oneself.”

Had a fab fun summer with the girls!

Had a fab fun summer with the girls!

Such an outlook could only have a detrimental effect on family life and I worry about this. Certainly, a lot of hedonistic pursuits involve adult, grown up things and my family are everything to me. I’d never do anything to endanger them or jeopardise my relationship with them or my wife. But it amazes me what people say. I guess there’s a lot of received wisdom around expectations of how people, me in this case, should behave when confronted by a life threatening condition. When I received the bad news last year a friend told me if he had a terminal illness he would be tempted to go and enjoy as many experiences as possible, even sexually, and tick off the things on his list. I certainly don’t feel pressured to do the same. My desire has always been to spend time, and have experiences, with my wife and girls. But even if I stuck to packing in wholesome, family orientated experiences with Louise and the girls I can’t live a reckless life constantly chasing fun with my family, because my daughters need structure and stability.

There's a time and a place (Disneyland!!) for fun, but my children still crave normality!

There’s a time and a place (Disneyland!!) for fun, but my children still crave normality!

 

It’s almost impossible for the responsible father with terminal cancer to live life to the full, but I still feel under pressure to squeeze as much into my life as possible and I worry sometimes that I’m not making the most of my time. I have been blessed with this extra time. It’s now been 7 months since we passed the upper limit dictated by my prognosis last year and I don’t want to become complacent. I do want to pack in as much as I can, but I also want the girls to have as normal a life as possible. Disneyland is great, but sometimes children need and indeed crave the boring and routine.

What passes for normality in our house.

What passes for normality in our house. We have to fit in fun around family life and not go crazy trying to chase fun.

 

I am worried about time and my use of it, but I am obviously very grateful for the opportunities I have to be with the girls and make memories with them. There are milestones I have lived to see, like birthdays and my middle daughter Isobel starting school. But the most important thing that time has enabled me to do is build relationships with my children, especially my youngest Heidi who has recently turned 2. When we got our bad news last year I remember Louise saying she hoped I would live long enough for Heidi to remember me.

Heidi was tiny when we went to Disneyland in May 2013

Heidi was tiny when we went to Disneyland in May 2013

We received the prognosis when Heidi was approaching 6 months of age, so there was a point when this was a remote possibility. Last year when we went to Disneyland, before I started my current treatment regimen in June, I remember making videos with Heidi while Louise and the other two went on rides. At the time I was desperate to record me talking to her, so that she might just remember me. A vain hope really, considering she was only 9 months old. Back then she was so young there were only mere suggestions of her personality.

 

With Princess Jasmine

With Princess Jasmine

Now, having lived for longer than we thought I would, being remembered by Heidi is looking a little more likely. She is developing and showing signs of the person she’s going to become. I’m so lucky. Like any parent of a young child I’m really excited to get to know my toddler, especially as I didn’t think I’d have the chance. She’s very affectionate, loving and kind, but she’s also quite mischievous and headstrong. There’s no doubting her feelings for me. I know she loves me. Relationships with children are honest and their affections are pure. When I’ve been in bed all day after chemo or when I’ve been on a long run she calls out my name, toddles over and hugs my leg. Louise tells me that when I’m out Heidi asks her “Daddy run?” She’s not only pleased to see me, but wonders where I’ve gone when I’m out.

Love being with Heidi and seeing her grow. 2 is such an interesting age!

Love being with Heidi and seeing her grow. 2 is such an interesting age!

Of course all three of my daughters love me lots. I’ll never take them or their love for granted. That they love me so much is still a surprise to me. It’s magical and amazing. They are life’s greatest blessing and I thank God for them every day. Having this time with them is incredible and I want to enjoy life, but not to the exception of all else. Raising money and awareness is great and making memories for the girls to savour when they are older is good, but I need to make sure I’m not fixated on creating a legacy and forget to enjoy them now.

Need to make sure this lot are at the centre and not pushed to the periphery

Need to make sure this lot are at the centre and not pushed to the periphery of my life!

It’s a tension that lots of parents have to contend with. Most parents need to make sure that they have a good work/ life balance. Whereas I need to make sure I don’t die wishing I spent more time with the girls and less running marathons. I want them to love fitness as much as I do, but if the only memory they take away from me running marathons is that I meant I spent lots of time away from them, then I will have failed. They need me now too and there is a fine balance to strike and I’ve not always got it right. I’ve almost finished my six marathons in six months now, but during my next fitness challenge whatever that will be, I’ll do my best to make sure they remain at the centre of my life.

Ben’s Bowel Movements. Running 6 marathons in 6 months in support of Cancer charities: