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:

 

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