This week marks the moment, six months ago, that I was told I had six to 12 months to live.
As moments in my life go, it is one that sticks out as being shocking, other worldly, indeed almost too enormous to comprehend in the moment.
Yet, here I am, at the lower end of that life expectancy, still alive and kicking and with as much determination as ever to smash the upper-end prediction too.
In my case, it was a terminal-cancer diagnosis after years of bad luck with a disease which cruelly takes too many lives too soon.
As of now, I am six weeks into a course of chemotherapy which I take every single day of the week. The plan is for me to stay on it until either a future scan shows it is not working in its aim of – effectively – slowing down the inevitable, I decide the symptomatic downsides outweigh the benefits or I die.
The past six months, while having flown by in the blink of an eye, have also taught me so much about life and death.
I imagine we all have a rough idea of the sorts of things we’d say to our best mate if, God forbid, they were given the worst news that their life was to be cut short.
Prior to last November’s conversation with my own oncologist which, suddenly, thrust me into the position of being that person, I would have guessed my advice would have consisted of, variously, ‘quit your job’, ‘get off social media’, ‘go take loads of holidays’, ‘blow your savings’ and – to dole out that cliché – ‘live your best life’.
The reality, for a myriad of reasons, has proved a million miles away from that.
I haven’t quit my job. I have dramatically scaled back my workload, but that’s more out of necessity as my body needs a lot more rest and I have many more sleeps during the daytime than I used to. But work is important to me. It gives me purpose, it gives me structure, it gives me a huge amount of reward. It’s why, twice a week, I report for ITV News, usually covering the top story of the day, as well as a weekend show on Channel 103 and semi-regular columns for this here newspaper.
I haven’t logged off social media. Indeed, I have found Facebook, Twitter et al even more useful than ever. I use them for a bit of ‘kidology’ to fill in the gaps between my working days to appear busier than I am. Indeed, many of my posts are drafted and published from my bed. Perhaps I am inventing the future of work without even realising it. But, even more than that, social media can be a wonderful place to share thoughts, ideas and observations, and connect with people in a similar situation to yourself, whatever that may be. It can also be a toxic sewer, so tread carefully.
Taking loads of holidays sounds a wonderful ambition. However, for pandemic-related reasons I really don’t need to expand on, that hasn’t been possible thus far. There is also the practical side of paying for them and having a husband with finite annual leave.
And then there’s blowing your savings. It’s one that regularly makes me smile because it’s so tempting. However, what if I don’t die on time? Imagine blowing every last penny and then continuing to exist, but penniless. It’s quite a thought. By the same token, I know that if I drop dead soon and haven’t splashed some of my modest savings on something unusually extravagant, it will feel like a wasted opportunity. Oh, where is the sweet spot?
See. This advice to the dying lark isn’t as simple as you thought.
I said that this past six months had taught me a lot about life and death, and it really has.
I am more present than at almost any point in my life. I’ve not mastered mindfulness or meditation, and my mind can wander and ruminate like the best of them, but it’s certainly an improvement on where it was.
Part of that is thanks to one of the palliative care team at the General Hospital who works hard to keep me focused on my own wellbeing. But a big part of it is that having a terminal-cancer diagnosis is strangely freeing. The things that used to really get to me previously now don’t.
I feel more able to let the smaller stresses slide by me as if I am coated in Teflon. Indeed, I feel like I’ve gained a fresh perspective that makes you realise 99% of the ‘stuff’ you think is a problem in your life actually isn’t.
For that, I am extremely grateful.
I appreciate the value of my husband, my family and my friends, though – again – the pandemic has got in the way of much of what I imagine I would have done in normal times to see them and truly value time with them. But, hopefully, that will come.
And then there’s the really small stuff that normally goes unnoticed. Each morning, as I make my first cup of coffee after my wake-up dose of chemotherapy that I am lucky to be able to administer at home, I look out into the back garden and notice how our plum tree has changed. I have watched it go from its apparently dead winter hibernation through its sudden bloom of beautiful blossom to its currently glorious cloak of rich green leaves ahead of the harvest of fruit emerging in the coming months.
I notice the birdsong. Yes, there are the shrill gulls making their very-early-morning presence felt from the rooftops some days, alongside the more tuneful chorus from their feathered friends, but even that makes me smile. I just stand and listen and breathe it all in slowly.
You see, there’s more to life than I ever knew.
And then there’s death.
We really are rubbish at talking about death. It’s something I have felt increasingly compelled to ‘normalise’ over this past six months.
In that time, I have put all my affairs in order. The will is sorted. The lasting-power-of-attorney stuff is in place. Even a plan for handing over my passwords and social-media accounts is waiting in the wings. Oh, and I’ve planned my funeral.
Visiting the undertaker to talk through the service, to consider the coffin, to drill down to a level of detail which includes whether my wedding ring will be cremated with me is an odd experience. But it’s also such a privilege. How many people get to plan the send-off that they really intend? Not that many, I would suggest.
I’ve had the chance to sit down with the minister who will lead my funeral service to talk about tone and readings and songs. I will die comforted in the knowledge that I know precisely what the day should be like for my husband and that there is a plan in place for him to be as okay as he can possibly be at such a difficult time as and when it comes.
We’re a bit pearl-clutching as a society when it comes to all that stuff.
‘Oh, don’t be so morbid.’ ‘For goodness sake, you’ll live longer than they expect.’ ‘We don’t need to talk about that stuff right now.’
I’ve heard it all, and it’s all completely understandable. But I just pose the question of whether we would all be better off if we were to find a way to normalise the conversation around death.
Rewind ten or 20 years and talking about certain cancers, for example a testicular or breast cancer examination, was absolutely taboo. Today, it barely causes a flicker. Lives have been saved as a consequence because people feel able to go seek medical help if they find a lump or a bump.
Perhaps we could do the same with death? If it was a normal part of life to consider our deaths, maybe the weight would be taken off the pressure cooker at the point we depart this mortal coil. Our wishes would be known, our families would have a better idea of what to expect, and it could eventually be seen as the inevitable outcome that we all know it really is.
There are also bigger conversations to be had around death.
Who or what should determine when I die?
It’s here that I tread lightly into the assisted-dying debate. In recent months Alain du Chemin, who died just last week after his own terminal-illness prognosis, has been a flagbearer for the debate on the issue.
He shared his own decision to book in with Dignitas so that he had that option when the end of his life drew close.
He also spoke publicly, and with passion, about his belief that it is the individual who should have the right to choose how their life ends. The strength he showed to nail his colours and speak with candour about his own failing health, while propelling the issue into the spotlight, was immense.
My condolences go to Alain’s husband, family and friends at what must be a horribly difficult time.
But I do hope they take comfort from knowing he made a difference simply by sharing his own situation and perspective. What would be sad right now would be for that to be in vain. Alain has given us all, as a community, the focus and opportunity to talk about this stuff.
My own take on this issue is also naively simple: it’s my life and it’s my death.
I have made no such Dignitas plan. I haven’t even considered what my dying days will look like beyond a cursory Google search of ‘what happens when you die?’ to better understand the physical process of those dying days. But I would like to think that, if I knew it was time to go, those around me – including any palliative carers – would ensure I had a pain-free exit.
It was my privilege to chair the assisted-dying debate at the Arts Centre a couple of years back. I thought both sides made their arguments well. However, I couldn’t help thinking that the arguments from those opposed to assisted dying were really arguments about ensuring we got assisted dying right.
I think all sides were clear it should not be some state-sanctioned free-for-all which would allow doctors to knock off their patients on a whim. So long as a protective framework can be constructed, and there are many such examples around the world, then who am I to tell somebody that they shouldn’t be in control of their own death?
Here in Jersey, a government-convened citizens’ jury has been weighing up the issue and is due to reach a conclusion at the end of this month. If the jury recommends that assisted dying should be a legal option in the Island, it will then be for our elected representatives to debate the detail, something which is currently on track to happen by the end of this year.
It may not be something that’s agreed and enacted in my lifetime. It may also be something I would never need to make use of anyway. But I can’t help feeling that there is a way of navigating both sides of this debate to offer both choice and protection.
For now, I’m alive.
I shall continue working, while gradually easing my foot off the pedal. I shall crop up on social media like I did previously. And I shall certainly get that holiday the moment the world is open enough for it to sensibly happen. Will I blow all my savings? I expect not. But will I live my best life?
What I’ve learned in this past six months is that I always did and I will continue to do so. Surrounded by the people, purpose and things I love, I really am the luckiest man in the world.
My great sadness is that, if I’m being brutally honest, it took a doctor telling me my death was on the horizon to make me realise it.
