In April, Simon Boas, then 46 and living with terminal cancer, touched readers of The Mail on Sunday with his deeply moving reflections on dying, which proved to be a greater paean to living. He died in July, but not before writing The Beginner’s Guide To Dying, a book replete with his wisdom, humour and practical advice. Now this extract from the newly published bestseller will captivate readers once more…

I have recently been informed that, like it or not, I have to go to the South Pole. Or at least, that’s the best way I can think of describing what’s happened to me in the last few months. 

About halfway through the soggy summer of 2023, a surprised doctor confirmed that the weird lumps in my neck were metastasised squamous cell carcinoma, and the reason I’d had trouble swallowing for a year was a tumour in my throat.

Sadly, although the chemo and radiation did a good job on the tumours in my throat and neck, my lungs are now riddled with the bloody things. The prog­nosis is not quite ‘don’t buy any green bananas’, but it’s pretty close to ‘don’t start any long books’.

So, it seems I’m going to hop the twig, and probably sooner rather than later.

In one sense this is all fantastically unlucky and unfair. I’m 46, unbelievably luckily married, doing a job I love (running Jersey’s overseas aid agency), and suddenly facing the possibility of my own extinction.

I won’t pretend a note of self-pity hasn’t occasionally found its way into the songs I sing to myself at 4am. And I must also admit to hearing a few bars of anger at that hour too: at taking more than a year to be diagnosed, at cancelled scans, bureaucratic errors, information droughts, etc.

However, that way madness lies, and during daylight hours, at least, I’m pretty good at tuning those emotions out.

So, I’ve managed to avoid some of the obvious pitfalls – self-pity, anger, blame – but how does it actually feel to get such a clear view of the scythe? Well, this may sound bonkers, but it’s not actually that bad. The one thing which makes my eyes leak is the thought of its impact on my loved ones, particularly my beloved wife Aurélie and my parents.

The word ‘widow’ now chokes me up, and it’s even worse if I use it as a transitive verb. However, I’m not really sad for myself, or even fearful, and in fact I’d say the feculent prognosis has fertilised some green personal growth.

I have developed my ability to prioritise. Important things: Love. Kindness. Meaning. Not important: Money. Status. Validation. It’s so easy to forget that the truly rewarding things in life are basically free.

What I really wish is that I’d understood all of this many years earlier. And it is my sincere hope that some of you lovely people might reach these conclusions too, while there’s plenty of sand in your hourglass.

Many things have given me comfort, particularly the huge support and compassion which my wife and I have received from friends, neighbours and even total strangers. I received so much love and support over the ­relatively short period between diagnosis and dying, and it has buoyed me enormously.

The instinct to reach out and provide comfort to people who are dying or suffering is a fundamental one. I’m so grateful to all those who did so: for my wife and me, it made a tough journey significantly more bearable.

One problem I came to notice, though, is that while we want to help those in that situation, we don’t always know how to do so.

Stemming, I think, from our lack of practice at dealing with death, we sometimes say or do things which might actually be a bit crass or unhelpful. I have certainly done so myself in the past and, knowing what I know now, I cringe a little when I think about some of the worst examples.

So, I have come up with a set of pointers for those who are about to lose someone they care about. Or even just someone they know. It’s very personal, and I don’t presume to speak for everyone else in my boat. This just reflects what has helped me, and also explains the few occasions when I’ve had to draw upon reserves of humour to deal with something which unintentionally walloped me on the side of the head.

Dying people are not all the same, and the overarching piece of advice is to be guided by them. Some may want quotes from scripture or recommendations for new therapies or plenty of random people dropping by, and if so, please oblige!

However, I’ve settled on these tips after discussions with few fellow one-way visitors to Cancerland.

Do get in touch

This is the number one piece of advice: don’t wait until it’s too late, or let worrying about doing something wrong stop you. It’s wonderful to know that others are thinking of you.

Indeed, in a few cases I found myself thinking, ‘Bloody hell, why haven’t I heard from so-and-so?’ I managed to get past that by reminding myself that people are scared of death and of saying the wrong thing.

Or maybe my imminent death awakened some trauma, or they were going through a really difficult patch themselves (so, advice for the terminally ill: don’t keep the score).

However, it is nice to be contacted, and I loved receiving messages both from those I was still very close to and those with whom I hadn’t spoken in 30 years.

Don’t put too much onus on people to reply though. It’s lovely to get a message saying, ‘no need to respond to this’ because quite often one doesn’t have either the energy or the mental bandwidth to do so. It’s often best not to ask any questions, because people feel they need to supply an answer. 

As well as emails and letters, this particularly goes for platforms like Facebook and WhatsApp. ‘Thinking of you today’ is much better than ‘how did chemo go?’ Anything which can be replied to with a simple ‘thanks’ or heart emoji conveys all that love and support without creating an obligation.

But don’t just turn up

I was so lucky to have a very wide network of people I cared about a lot, but when you know you’re dying you need to prioritise fairly ruthlessly, and to choreograph your remaining days as much as health and tedious medical procedures allow.

An unexpected visit – or indeed a visit imposed with little warning – can be a colossal inconvenience both to the dying and their immediate family. Offer once and if they don’t come back to you, drop it.

Don’t say goodbye

Apart from with my immediate family, I found no need or desire for final farewells. Remember me from that weekend we spent together, or the time our fireworks burned down the neighbour’s shed, not from a couple of hours when I’m feeling physically rotten.

Don’t skirt the issue

All of us have different tolerances for directness or euphemism (personally I’d rather say ‘died’ than ‘passed’), but you can gently broach the fact that you know the news isn’t good, and even that time may well be short. This is not the time for a breezy email about something completely different (although a tiny bit of news is always welcome).

Instead, if you write or message, consider bringing up some happy memories. It might even be the moment to broach the topic that ‘I’ve always wanted you to know…’

Do listen!

This is a surprisingly difficult one for everyone, all the time. The fact is that in most conversations we are only half taking in what the person is saying, and the rest of the time we’re thinking about what we will say back.

People who are dying – or people who are dealing with a complex and scary new world of illness and treatment – are all different, but they are all trying to navigate something strange and frightening. I’ve lost count of the number of times I’ve tried to explain what’s going on and how I feel about it, only to be floored by a comment which shows that none of it has sunk in. (‘Oh yeah, Dad had pancreatic, but mercifully it only took three weeks.’)

I’d like to quote here my friend Martin, a Falklands War hero, in fact, who has advanced prostate cancer: ‘Listen – and listen carefully. It can be disconcerting to try to explain the complex and confusing world we now inhabit, and we might still be getting used to, only to be asked a question that tells me immediately you weren’t listening.

‘Be patient and don’t be frightened of silence. We may need time to think, or compose ourselves. Silence is fine between trusting friends – you don’t have to keep thinking of things to say, because that will feel awkward.

‘Cancer people want to talk when we’re ready – we know you care and we are grateful for you giving us the time and chance to talk in our own way. Remember, at least for now, this is about us, not you.’

Don’t minimise things

However flippant I might be about my fate, be very careful about mirroring it. Dark humour is the preserve of the dying and not of the comforting.

I might make jokes about ‘Indignitas’ (a fictional euthanasia clinic where they push you out of the window wearing a clown suit), or about wanting my ashes tossed into the eyes of a peloton of cyclists, but you probably shouldn’t, even if you know me really well.

Also, avoid any sentence which starts with ‘at least’. I’ve had some corkers, and am lucky they amuse me, but dying people don’t want to hear that at least they’ll avoid the indignities of old age, at least they’ll be in a better place, at least they’ve paid off their mortgage, or at least they won’t have to vote in the next election.

A variant on both skirting and minimising, which my wife and I had a lot, was people insisting that against all the odds I’d recover.

People usually mean well when they say that somehow the palliative radiotherapy you’re having for the pain might cure you, or that their cousin’s dog-groomer went into remission overnight against all medical expectations, but it comes across as you not listening to me. Your refusal to accept my predicament isn’t kind; it smacks of you ducking the issue.

If the dying person is still a Panglossian optimist then do go along with it, but otherwise bugger that.

Don’t give medical tips

Don’t make specific enquiries about our health, and for goodness’ sake avoid touting any treatments. It’s not nice to be asked details about bone metastases, or the particulars of any therapy we’re undergoing (usually painful and often undignified).

Worst, though, is being sent advice or miracle cures. A very edited list of the treatments or medicines I’ve been advised includes black-seed oil, apricots, cherries, turmeric, honey, bicarbonate of soda, a sugar-free diet, numerous off-label drugs and a concoction of herbs only found in Namibia. While there may well be little-known things that will one day be shown to be of benefit, there probably isn’t a global conspiracy by ‘Big Pharma’ to keep you from accessing them.

Personally, my default position is that brilliant quote from the comedian Tim Minchin: ‘You know what they call alternative medicine which has been proved to work? Medicine!’

There’s also a tendency to remind people of the importance of staying positive.

There’s actually no scientific evidence that doing so makes any difference at all to a patient’s outcomes (though it’s so helpful to one’s quality of life), but most importantly it’s often rather difficult when you are full of tubes and contemplating how your parents will cope with you dying before them.

At best it can be a bit hollow, but at worst it can make the dying feel guilty that they’re doing something wrong.

Don’t bring God into it

I see the temptation – your belief system has helped you so much, and you want the person you love to feel those benefits as well. As they approach the end of their lives, many people – myself included – become more interested in matters of the spirit and the soul. But please be careful, and take your lead from the person who is dying.

Personally, in my last few months I enjoyed engaging in religious discussions with a few people whose opinions I really valued. I also enjoyed looking at different belief systems.

But you’re unlikely to help anyone much with quotes from the Bible or the Koran, or YouTube videos of preachers.

You run the risk of causing offence, by inadvertently suggesting that someone has been wrong all these years.

And by awakening or feeding a sense of false hope in someone, you are potentially creating an obstacle to what I found was the most beneficial thing of all when facing death: coming simply to accept it.

Equally, if you’re a committed ostrich-headed Dawkins atheist (as I was for several years), now’s not the moment to tell someone (as I was told) that they’re no more important than ‘a squashed insect’.

Do offer specific help

People around us – and even further afield – were so kind in the support they provided my wife and me. The lawn got mowed, the dog got walked, and food would just appear on the doorstep. Someone even rented scaffolding and fixed our roof after a big storm.

If you offer help, try to think of something in particular which will be useful. I realise that over the years I must have sent dozens of messages which included the line ‘please let me know if there’s anything I can do’, and unsurprisingly nobody ever took me up on it.

The reason is that when you’re dying it’s often quite hard to ask anyway, and also you hesitate to go back to those general offers with specific requests because you don’t really know how sincere they were.

What can you really do to help, beyond (most importantly of all) just gently letting someone know they are in your thoughts?

Maybe it’s the school run or a frozen lasagne.

Maybe it’s proposing to let other people in a particular friendship group know how they’re doing, so the dying person doesn’t have to tell everyone separately.

Maybe it’s offering – but not insisting on – a chat or a cup of tea on a specified afternoon (I also used to wonder why ‘Do call any time’ got no responses).

Make it as easy as possible for the dying person to say either yes or no.

 

©Simon Boas 2024 

Adapted from A Beginner’s Guide To Dying by Simon Boas, published by Swift Press at £14.99. To order a copy for £13.49 (offer valid to October 12, UK p&p free on orders over £25) go to www.mailshop.co.uk/books or call 020 3176 2937.