Nik's story: avoiding "it"

Are you comfortable thinking, feeling and talking about death? Nik most certainly hasn't been. He describes himself as "a stereotypical man", not wanting to expose weakness or to cry. Death has been a topic that Nik has actively avoided for most of his life. In our conversation Nik courageously and openly explores how he and his Mum are now starting to talk about dying and death after her recent diagnosis. We talk about what’s important to Nik and his Mum, and how we each have an opportunity to make more of the life that we have now.

Welcome to Nik’s story.

Hosted by: Sam Meikle

Produced by: Spark the Difference

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Show notes

Here’s what Nik share in this conversation:

00:09 These conversations are all real and can sometimes be a bit raw. Remember, you can always pause and take a break for a bit.

03:59 Growing up Nik first learned about death from Herbie the Fish

06:08 What Nik knows now about death: "as much as I should, more than I want to"

08:12 How Nik's life was turned upside down after his Dad died, because Nik was a “stereotypical male"

11:59 Nik now thinks about death in very practical terms: “how am I going to make things better?”

15:54 A change in prognosis

21:27 How the last moments of someone’s life can be what we’re left with

24:09 How Nik will approach conversations with his Mum in the coming months

28:59 What a good death looks like to Nik

31:18 How Nik explores his thoughts and feelings about his own death

36:27 Accelerating the return of all of our energy back into the world

38:42 Talking to friends and colleagues about death

42:51 Nik’s first funeral was exactly like you see it on TV

45:36 Final thoughts: these conversations need to happen and also, seize the day.

A note on looking after ourselves: these conversations are all real and can feel a little raw. If you’re struggling with the content that we’re talking about, please seek support. This might be from a trusted family member or friend. The Samaritans Team are always available to talk and you can contact them on 116 123.

 

The full transcript

(Sam) To start off, where's your accent from?

(Nik) I get asked that question a lot. I'm actually from the south coast, but I have an annoying habit of appropriating other people's accents whenever I'm around them, so I to tend to get a bit of twang.

I hear you. And when I did my first podcast interview, I was talking about my time in Australia and I was like, [terrible Australian accent] “I really am an Australian”. You can hear it. And where have you spent most of your life?

Well I grew up on the south coast, so I was down there for 20 years, living and studying in a town with people generally go to die, actually. And then I moved to London after that. The lion share of my childhood was on the south coast, but I spent a lot of time also in France where the majority of my family is.

And who's - where's the French side?

My mother.

Your mother?

Yes.

And an English Dad?

Yeah. Well he's, he's mostly English part French as well.

Are you fluent?

Let's say no. [Laughter]

I know Nik before the interview and I beg to differ. Let's start at the very beginning - growing up as a child, what did you know about dying and death?

You could say, thankfully I probably didn't have that much exposure to it at a very young age. I don't think my parents actively tried to shield either me or my sister from it, but neither did the occasion arise that we actually were forced to confront it in any particular way. There was nothing immediate. So it was fairly limited I would say.

And did you have pets as kids?

Yes. Yes. Both my sister and I had a fish each. Hers was called Chips and so I was going to call mine, Fish. But then I saw Herbie goes to Monte Carlo and decided to call it Herbie.

Nice. And where are these long living fish?

No. Well, I mean it wasn't like they kind of were brought home from the fairground and were gone within a week, but my goldfish died I think within a six to nine months of my having it. I should hasten to add that it was not through my own neglect, but through the pet sitter that we recruited, who was actually a next door neighbour who didn't do a very good job of looking after my fish whilst we were back in France. So I came back to discover that the fish was no more.

That’s very sad. I don't know why I'm smiling.

That was my first exposure to the loss of something to me.

I'm smiling because I had a similar experience with a pet sitter, where they decided they became to change the water in our fish tank.

Oh no.

And they took all the rocks out and really cleaned, and put the water in -

Filter?

Put the fish in and then the rocks.

Oh great. Oh, you're kidding. [Laughs] I shouldn't laugh, should I?

It's terrible. What do you know about dying and death now, as an adult?

As much as I should, more than I want to if I'm honest. I haven't probably had the most traumatic exposure to the death in itself other than having lost loved ones. I don't know. I mean it's one of those things I've actually always tried to actively avoid thinking about until I've been forced to. But I have been forced to in the last 10 years, probably more than I had expected or sooner than I expected.

In what ways?

Being from such a large family, Catholic family in France with eight aunts and uncles in total. They all got to a certain age and it was a bit like dominoes unfortunately. And then subsequently there was the diagnosis that my Dad received for prostate cancer, which he beat.

And then rather unusually was then diagnosed with another primary cancer, with no relation to the original initial prostate cancer, which was lung cancer. Which took him, I suppose fairly quickly in about the space of nine months, less than nine months. It was fairly aggressive.

And having tried so hard to avoid death and conversations about it, I was thrust into that quite hard. My family is very loving, very close and it was very intense experience - kind of an immersion into the entire experience, which I suppose is probably normal. But, I - that was a hammer blow to me. I lost so much weight, did not anticipate how it would affect me, but it did.

What do you remember about that time?

There were a number of negative things going on in my life at that time anyway. A difficult breakup with my wife at the time, combined with the diagnosis meant that essentially it felt like the foundation of my life was - had gone.

If you describe that the most important things in your life as I think I've established - is family. And the home that you live in is no longer your home, that the family that is your family is essentially minus a leg, so to speak. It felt like a seismic shift and I just not, or had not tried to understand how I would need to process something like that. And literally turned my life upside down.

And how did you get through it?

Badly. I handled it badly. I suppose I was a stereotypical man about the whole thing, didn't talk about it to anyone, internalised it. I ended up making myself ill and probably took a lot longer to deal and process with it as a result, because of the kind of machismo, or male pride of not wanting or being able to talk about it. Not that I didn't have the avenues of the doors open to me to do that because my family is a very open family, but I actively eschewed every opportunity to do so.

Why?

Don't know. I mean, I guess the pride thing was definitely an element to it. Exposure of a weakness. I don't know. I didn't want to cry? The one time that I did cry was at my Dad's funeral - and I guess I didn't want to make it real.

So actively talking about it would have brought some solidity to it and I was actively seeking to avoid that.

How's that feel now, looking back on that time?

Oh in hindsight, I feel like an idiot. I'm not saying that I've necessarily learned from any of those lessons or at least I have tried to, but I am still conscious of the fact that with my mum's recent cancer diagnosis, I'm still by default trying to avoid the conversations that she is trying to engage us in.

That's tough.

Well, I mean I suppose it's good to be aware of it, but it probably would be healthier and better for me if I was to actually try and do something about it.

What would you do?

I think I would need to proactively start the conversation myself rather than have the conversation - I don't want to say thrust on me, but it's one of those things where you're only at certain moments in a place where you feel ready to talk about it or want to engage with someone. And whenever my mum wants to talk about it, it's not necessarily something that I want to talk about at that moment in time.

I'd rather go away, process it, think about it a lot - a lot - a lot, and then come back and revisit the conversation.

How do you think about it?

In very practical terms really. I immediately leap to, ‘how am I going to make things better?’

And so I suppose there is an emotional element to it as well. I do instinctively wants to make things better, but my way of addressing that is to think of things I can do that will ease the situation for someone or for myself. That's probably the instinctive thing.

Luckily the dynamic between me and my sister is that we divide and conquer in terms of attacking difficult situations within the family. So we kind of compliment each other in that way.

What's her approach? Why is she choosing to divide and conquer this task?

Which task are we talking about in particular?

The difficult conversation with your Mum.

Well, to be honest, it's more my Mum’s that engaging the conversation with us. And my sister is really happy to talk about her feelings, and have those kinds of, let's call them 'deep and meaningful' conversations.

And I'm almost more comfortable with her having that conversation, relaying it to me, as a kind of bystander. I then have time to process it and then I can return to the conversation with my Mum saying, "oh, Cas said you said this" and that way, that's our way of kind of - she's the shield.

How does your Mum raise it with you?

Directly. Bluntly. Without preamble.

For example?

Well she doesn't announce that she'd like to have a conversation about it. She literally jumps into it and says, "I was thinking about how I would like to be buried. I don't want to be buried in a box because I'm terrified that I'll wake up and be underground and trapped in a box. So you need to burn me." Is there any other way to respond to that question other than, "okay?".

And you were making a cup of tea in the background or something and it comes and hits you across the back of the head.

Yes, basically. Yeah. I'm able to think of it in fairly abstract terms. Like that's a situation that I am going to have to face at X point. I now have that information of what she would like to have happen in that situation. That is good to have that information. I didn't want to think about the fact of everything that goes around it, but I try and approach it that way.

In terms of the practicalities, are you documenting them with your Mum or is it all up in your head?

That's a good question. No, we're not documenting it. Although that is maybe something we should give some thought to. Maybe for some of the financial aspects of her life we would, we certainly did for my Dad. We have Power of Attorney over my Mum already. But no, those kinds of things is - aren't in her will. So that's probably something that was definitely worth considering.

And just thinking ahead, it can take some of that emotion out of the situation.

You mentioned just before we started the interview that you had an appointment with your Mum yesterday and they changed the advice that they had on her prognosis.

Yes.

Can you tell us about that?

Well, she was initially discharged from the hospital where she was being treated, the Sarcoma Orthopaedic Registrar had intimated that she had six months left to live.

And that had kind of shaken us up quite a lot. That was something that we hadn't expected to hear. I had been wilfully thinking that the oncologist that had been treating her for her previous cancer was going to be able to - not magically make it all away with - none of us were that kind of ridiculously, optimistic, but at least be able to prolong her life a lot longer than six months, certainly.

Because she seems to be in such fine fettle. It seemed hard to imagine that someone could just deteriorate that badly to such an extent that she would be dead in six months. So that was all a massive shock and very difficult for us to process. My initial reaction to that was, ‘no - my gut says this is not correct. Let's wait until we see the oncologist that has been so good’.

Which we had an appointment for yesterday and after having spent the last five, six days trying to process this kind of very stern opinion that she had six months left and my Mum had been busy reconciling herself to that and she had in fact accepted it - "made her peace with it", I think she said. And then when the appointment with the oncologist happened, despite the administrative snafu that meant the appointment almost didn't happen, which of course added to the stress of the day.

And he indeed confirmed what I hoped he would in the said, "no, there's a good chance that we can actually not make this go away, but certainly extended well beyond the six months. It might be 12 months, maybe 18, might be 24. We don't know, but it's certainly six months is very pessimistic".

And my Mum was on the phone to me straight away because I wasn't with her - my sister was, and she goes, "you're right! This is great! This is fantastic! I should have listened to you all along".

Which was obviously brilliant, lifted my day completely, lifted all of our moods completely. I mean none of us were so blind to the fact that we obviously know that she is going to be going, but that kind of stay that she's been given, means that we've got a lot longer to try and process and deal with all of these things rather than this kind of death knell, which seems to have been kind of unilaterally passed down to us by some chap in the hospital who we didn't really know. It's been a roller coaster few days, that's for sure.

And it's interesting listening to people's experiences of when a loved one is in critical care - of what their experiences with clinicians are. People share that often they think the clinicians are trying to tell them something that they're not quite getting at that point. But later on they can piece together going, ‘well actually they told us mom had this at this stage, if we were in a different frame of mind...’

How do you think health care professionals and social care professionals talk about dying and death?

Honestly, the ones that I've been exposed to over the last four weeks - it has felt like they were trying to protect themselves more than caring more about the patient or the family's feelings. By immediately stating the worst case scenario, by presenting the most negative possible situation from the outset, which I don't think is necessarily positive for people's mindsets.

I understand it from a practical perspective completely - and certainly people want and need to be in possession of all the facts. Actually, maybe they don't - maybe they want to be ignorant of the whole thing? Certainly in our family that would be the case - to be, to know all the facts is great, but your bedside manner mate, maybe work on that.

So I think that yes, they give us all the information we need to - the way they deliver it, not great. And the attitude to it was clinical more than compassionate, should we say?

I sat down with the surgeon once and said, "if he could make any change in health and social care, what would it be?" And then he goes, "I'm a surgeon, I get three, like, great. Okay. He said he would have more time, more touch and more compassion from staff to patients. And he said if he could go into every medical school across the country, these three things matter. And another person I spoke to said, “the last moments of someone's life can be what you're left with. And can remove or dampen a lifetime of happy memories.”

I think that is absolutely spot on. Certainly given the way my Dad's passing came about, that really kind of echoes with me quite strongly.

Would you be comfortable to talk about that?

Yes.

What were his last 24 - 48 hours like?

Dying of thirst. As opposed to cancer, which is bloody awful.

We didn't understand that ourselves. And that is one of my Mum's biggest fears that when she does go, that she will be in that kind of situation where she's clearly dying and she perhaps is not able to express herself or her needs.

I'm not the brightest spark in the box. I'm not a nurse. I might not be able to understand what she might be needing. So I'm scared that I wouldn't be able to anticipate her needs and she's terrified of suffering the way that my dad did. It was - looking back it makes me feel awful. All of us - makes us all feel awful to think that it was like that for him.

It's quite shocking to hear that.

Yeah. They concerned themselves with many things such as pain management, which is important of course. You want someone to be as comfortable as possible in their passing and you want people to be able to have time to make their peace with it and make peace with their family if they need to. And the family needs to know that their loved one is as comfortable as can possibly be.

And that realisation that one of those fundamental elements was missing - mortifying, not literally, but obviously.

Are you okay?

Yeah.

How will you approach conversations with your mum in the next month, two months, six months?

Any conversations? That's interesting question actually because it's something that we've touched on recently.

And she said that one of the things that has really been important to her over the last few weeks, especially the last few days when she's been contemplating her mortality more than she had been, was that she just wanted people to be normal around her and to talk to her about boring, mundane things and not avoid talking to her just because all, there's this spectre of death in the room.

And she's come back to it quite a few times and she was saying to me this morning that she even went as far as putting something on Facebook about it to try and encourage people that might be fearful of contacting her, for having to talk about the ugly 'cancer' word, or 'dying’, or any of those nasty things that they don't want to or too embarrassed to talk about.

She just wanted to hear about mundane things –

Talk about Brexit -

Talk about Brexit and talk about the hubcap falling off the car was the example that she gave me this morning and I thought that just makes complete sense.

I'm not sure that is something that I would be comfortable doing. I think I probably want to not talk to anybody at all, personally -

If you were in her shoes?

If I was in her shoes, I think I would probably be become a recluse. But her attitude is, ‘no, no. I am going to make the absolute best of the time that I've got left. If you want to come and talk to me about how your begonias are doing, let's talk about it.’

That's fantastic. And my heart feels very warm to hear that a big drive for this work is how to have conversations with people about what's important to them. And that may be do you want to be buried or cremated? Or actually let's talk about the bloody begonias - and it's what matters to you at that time.

And I think often we can over medicalised or legalise or my Dad has the spreadsheet called where the money is and that is his view of preparing. But there's so much more that goes behind that.

I remember my Dad was still mobile before you became a bed bound, he was hugely practical about everything.

And I remember there was a time when I went home to spend some time with the family and he was organising all the paperwork and he took me upstairs and he was saying, ‘I want you to look at all of these files. This is where I keep this, you'll need to know this for Mummy’ and all of that kind of stuff.

But he was not a hugely usually demonstrative man, affectionate. Although he became more so as he got older, but the entire time that we were having that conversation, there were tears in his eyes whilst he was doing that.

And that was awkward and difficult, but that was his way of processing it and trying to make things okay for people. Anticipating how it would be for us afterwards and trying to make it as easy as possible for us, which is absolutely him to a T.

So one aim from these podcast episodes is to have conversations earlier, but the other one, the bigger, more broader, ambitious one I would love to see is, how do we make it conscious choice on how we live? And I think if we talk about what we imagine or would want our end to be, does that influence how we live our life now? What do you think?

Should it influence? Is that the question? Should it influence how we live our life now?

Should it? Could it? Would it?

Perhaps. I'm not going to die anyway, I'm going to live forever.

Are you?

I’m going to be cryogenically frozen.

Ian says to me, “you've gotta send my ashes into space”. I was like, “absolutely not”. “No, you will”. He's like, “I’ll come back to haunt you until you push my ashes into space”.

Absolutely. Quite right.

What does the phrase a good death mean to you?

At the top end, I would say a good death would be going when you choose having a choice about it.

But I suppose realistically, it's having the time to process it and it's having time for your loved ones to process it. And apart from the obvious comfort elements, which I think are often important, if it is going to be something that you have advance warning of, I would like to think there'll be no unfinished business or no words unsaid.

So if I was forced into the position where I knew had a finite time left and it was two weeks, two months, two years. I'd want to make sure that the conversations that I’d avoided or shied away from were had.

And equally the people that I cared for knew that I cared for them and that we had time to enjoy together beforehand.

Can I be a bit challenging?

Go on.

I reckon you can do that now.

I think I'm 50% there already. I've never been shy of expressing my thoughts or opinions. I've never been shy of expressing my love for people.

However, making the most of life before - the bucket list elements say, perhaps not and yeah, perhaps you’re right.

Do you have a bucket list?

I have a To Do list that's looking pretty long, but no bucket list!

Nik!

Yeah. I mean there's places I want to. Yes, there's a long list of places that I would feel that I had not lived my life properly if I hadn't seen them or enjoyed and experienced them. In terms of experiences, no, not really. But yeah, I guess there is a bucket list.

If you're comfortable to share, how do you explore your thoughts and feelings about your own death? Or do you?

I don't think I do actively - other than fearing it massively.

I'm really sincerely don't want to die. It's not the act of dying that I fear. I just really don't want to be not here anymore.

Well you’ve said you're going to be cryogenically frozen, so -

That's my flippant way of saying that basically, yes.

What is it about not being here?

Oh, it's the fear of what comes after, if I'm honest. Which I suspect is pretty definite. I don't know if that's one of the questions on your list, but I don't think there is anything after, I'm not that way inclined. So I feel that when I die, that's it. And there's nothing left behind other than memories. So yeah. That.

It's quite a sobering thought, isn't it? We've not even had a drink yet.

Did you have a religious upbringing? You mentioned Catholicism -

So Catholic family in France - in the sense that they were raised at Catholic schools and so on. However, I was Protestant, I was christened. I had some exposure to Sunday school. I never had any form of religion forced on me, it was left as an option. And I decided not to take up that option.

As you know, I have a complicated relationship with my Catholic upbringing. And I remembered being, I couldn't have been more than five or six at my first confession and the priest - I remember being in this tiny, tiny room with him, and he said, "Samantha, if you don't confess, you're going to hell."

I was like, "but I don't have anything to confess." And he's like, "but it's really serious. You need to say all of the sins that you've done because otherwise you will go to hell." So I remember making something up.

Which in itself...

Which - looking back! But I remember being so afraid of this - I didn't even know what to call it, this fear of what could happen to me if I do things wrong.

Yeah, yeah. My mother was raised - not raised by nuns, but she was schooled by nuns. And I think that having that Catholic element in her life, probably – not, I don't want to say foisted upon her, but she was fairly inveigled in the whole thing. I think that then led her to not want me or my sister to be forced down any particular roads and for us to make our own decisions and choices about where, or if, we had a faith in that way.

Is her faith still present for her now?

Yes. Yes it is. Despite the fact that she obviously has some negative memories and experiences from her schooling in that way and she is a very scientific, analytical, logical person - I think there's still definitely a portion or part of her that does believe in some higher spiritual power. Um, and while she just also tries to rationalise it, I think there's still always will be a part of her that does.

And I can imagine that’s a comfort - I see that in my elderly relatives. This comfort of the structure, the prayers, the formality in your times of difficulty.

Yeah. Yeah. I don't think that she necessarily sees it as something that she has to fall back on. But I think that she does still carry that somewhere around in her.

We did talk about it the other day in fact. When we were having a conversation about death and she kind of made reference to the ashes to ashes, dust to dust - and the idea that she wanted to be cremated was just a way of accelerating all of our - the return of all of our energy back into the world.

And she thought that the idea that all of these tiny bits of energy around in - not just the world, but the universe and the fact that all of these things came together and it came to form the earth that we live on now, and that when we die, we kind of go back and then we feed that cycle.

For her, she thought it was fascinating and brilliant and she preferred to view it that way rather, 'than I'm dying and I'm going to be dead. There'll be nothing left of me'.

That's beautiful. Did you have that conversation in French or English?

In English. It probably sounded better in French though!

Is Frenchness the word I'm looking for is? How does being French or having a French upbringing, how does that play into it? What do you notice of your English friends?

There is a contrast. We are quite comfortable talking about our feelings broadly and expressing them. And we were raised in a very affectionate way, particularly by my mother. But in the wider family as well. And I think that that has shaped how comfortable we are around each other and also how comfortable we are around other people as well. So yes, I don't know whether you would call that Frenchness. I don't know. Maybe it's Latin?

Outside of this conversation, who do you talk to about dying and death?

Well, aside from my mother quite a lot recently, I have discussed the topic with my friends. And it's been great to know that I have friends that I can feel comfortable - a) comfortable talking to them about it and b) that they can make the right noises back.

Work colleagues, I'm quite comfortable sharing and letting them understand the situation that I'm - that my family is in. I'm not necessarily looking for any kind of patting on the back or anything like that, but I feel that that kind of openness is important.

And how do you start that conversation?

I'm blunt and I come straight out and say it. People would ask me, "Hey Nik, how are you?" And I will say, "well, let me tell you. I'm a bit crap because..." That seems to get the message across.

Your Mum does a similar thing to you.

Yeah, she does. Yeah. And I appreciate that. I appreciate that. I would prefer things to be that way, personally.

I'm hugely practical when it comes to organising, doing everything in my life. But when it comes to something like this, I will run away, from thinking about it or doing anything about it.

Do you think that will change?

I think my Mum is forcing me to change and I grudgingly am grateful for it. I'm sure I'll be even more grateful for it, both when the time comes for her passing, but also, when I'm in a similar situation again or for myself or my partner. So yes, I think it is a good thing that she's doing that and I will benefit from it, if not immediately later on.

Is there anything you'd change about how you talk with her?

No. I mean, she's always going to be the person that talks more than me. That's always been the dynamic.

I'm quite happy listening to her. She moves things forward. She gets things said and she gets things done.

The fact that she feels comfortable and able to come out and say these things, whether it's talking about death or cancer or practicalities or "don't stick me in a box, please burn me" - yes, it's difficult, but at the same time it's brilliant and that is how she tackles everything else in life.

So why wouldn't she do this? And the fact that she can actively anticipate how it's going to feel for us and trying to make it as easy on us as possible. It's just brilliant.

I can imagine proud Mums listening to this going, "isn't he just a lovely son?” You're a lovely boy, Nik.

Thinking about the chart - the map that you did, are there any other threads that came out of that that we haven't touched on?

In relation to talking about death and dying, no I don't think so. I think that aside from the fish, Herbie, and the kind of gentle introduction I had throughout my life to the concept of dying - I think that it's been really, really OK, until it really wasn't.

I don't think I actually went to my first funeral until - I guess probably my mid to late twenties.

What was that like?

Just like you see it on TV. It was exactly like I imagined it would be - stiff, formal, people unsure how to act and behave. And I count myself amongst those people who was really unsure.

Particularly I think in the UK where people are a little bit more scared to show their feelings and their emotions. I think that that funerals are probably the biggest test for them because they obviously are upset, but there's a sense of decorum about the entire experience where, if it was a wedding, everyone would be going, "Yay!"

And for a funeral you can either treat it as a celebration of that person's life, which is how we tried to do things for my father, or a very, very sombre experience, which I don't think it ever should be and that was my experience for the first one.

What would you like for you?

Lots of irreverent jokes, which would be entirely in keeping with me.

I'll get writing. What does your Mum want?

Aside from cremation - having her ashes scattered at sea, or by the seaside rather - we haven't really gotten that far. I think that that she certainly would not want a sombre experience by any stretch. None of us in the family, particularly like funerals. My Mum loves a party, loves the dance. Loves the odd glass of vino. And I think the thought for her that people would be sad, or crying, or any of that would be the complete opposite of what she would want. I'm absolutely certain of that.

That’s pretty cool. What is this conversation brought up for you that you may not have been thinking about, or have thought in a while?

Being the practical person that I am, the conversation about how my Mum would like to do certain things is probably a conversation that will need to happen and I hadn't even considered that it would need to happen.

Your challenge to me, on making more of the life that we have now. Which is true because you can't just go through life expecting that you're probably going to live until you're 70 or 80 or 90, despite whatever medical advances there may be. You might well get hit by an asteroid or run over by a bus tomorrow. So yes, perhaps our attitudes to life in general should change, mine in particular. Maybe I should be seizing the day more.

I'm not responsible for any future actions that Nik takes as a result of this conversation.

Also, if an asteroid strikes, I did not know about it coming, I promise.