‘I don’t want to die. But I will. Perhaps quite soon’

LIFE can be so much better when you don't have much of it left.

Why a terminal cancer diagnosis was the best thing that ever happened to me.

It sounds odd, and it still even feels a bit odd reading it back now, but I have to say it's true.

My life has been turned around since getting the news in July 2018 that I had six months to live. And I want to share it because it makes for a great life. If you want it - without the tragic ending that comes with mine.

What I've learnt, you can use now, without having to "get your affairs in order".

I'm not 'that' guy … the cancer guy or someone who ever took a day off work. I'm just like you. I get the whole thing when you hear cancer stories, they just seem so far away from you. Like … "Yeh that's a sad story but it will never happen to me".

Cancer is so ubiquitous it almost doesn't register when you hear someone you know has got it. It goes by in many cases because it's become so normal, and it's been desensitised, because so many people have it.

I guess where it hits home is when the prognosis for you is terminal.

The doctor says to you (in my case), "if you did have six months to live how would you want to spend it?"

Me: "Are you saying I've got six months to live?"

Him: "Yes"

Robin Bailey and Sean Pickwell speak out on his terminal cancer diagnosis. Picture: Annette Dew
Robin Bailey and Sean Pickwell speak out on his terminal cancer diagnosis. Picture: Annette Dew

At this point I expected Ashton Kutcher to jump out from behind the screen and say "Punked!"I looked up to the hidden camera (that surely must have been there) and said, "did someone say KFC?" Robin and I started to cry, and in some bizarre coping method, then to laugh, even borrowing a line from Monty Python's The Meaning of Life, "well that's cast rather a dampener over the evening …".

Laughing was our go-to place, which I know sounds bizarre, but seriously, how do you deal with that kind of news at 56?

And I'm not a cancer guy.

I don't get Cancer.

It's for other people.

Now you are telling me to get my affairs in order, and to decide how I want to spend the rest of my … hang on, 5 months and 29 days (and counting…).

Poor old Mike our GP didn't know where to look as we bantered silly gags back and forth, in between tears and hugs. Both of our heads were spinning, and we had no idea what was going on, or the future implications of what he had just said.

One thing Mike said, that triggered some pondering at my end was, "think about how you want to spend the next six months. Do you want to spend it in hospitals around the world chasing treatments that very likely aren't there? Or would you spend it with those you love, doing the things you've wanted to experience?"

Robin and I left his office shell- shocked. We really couldn't believe it, and to some degree I still can't (more on that later).

We went home and my daughter Ally (26) was waiting (visiting from Sydney) as was Fin (19), Robin's eldest son. So how do you tell your kids you've been given six months to live. Seriously think about it. It was a tough night. We cried a lot, and I got on the phone to Jamie (22) my son and just said "I need you up here mate - now".

He and his girlfriend Rubie (22) got on the last plane out of Sydney that night and got in about 11pm.

We eventually got the whole family and girlfriends - 12 of us in total - together around the dining table and my mum, dad, sister and brother-in-law got in the car and came over for an impromptu party. When I say party that's kind of how it evolved. KFC and Vodka are my go-to fave things, so we sat around and ate the "dirty bird" and I think I finished at least half the bottle of vodka.

Robin Bailey and Sean Pickwell on their wedding day. Picture: Liam Kidston
Robin Bailey and Sean Pickwell on their wedding day. Picture: Liam Kidston

We laughed and joked and cried and everyone kind of just hung out and fed off each other. No-one knew what to say or do, except that we wanted to be there together.

We kind of chilled like that for the next couple of days, brainstorming bucket list ideas they wanted to do with me, and the next day we all went to Movie World for a day to get out, and to get it out of our system. While we were at MW, I got this incredible feeling and urge to ask Robin to marry me.

So, while the kids were at the stunt show, I took off one of my rings and got down on one knee and asked her.

Man, that was the most awesome feeling - when she said yes. And you know what, with that news hanging over our heads I would have understood if she had said no. Talk about buying damaged goods - that's certainly how I was feeling about myself.

Luckily that's not what Robin thought. Her dogged determination driven by her deep love for me, was the start of fighting this cancer bastard, and much of the learning I was to uncover, that the cancer prognosis triggered.

I've never met anyone like Robin. Not only are we desperately in love with each other, but no-one has ever loved me as hard, passionately and with such a ferocity that is incredible to experience. She will not lie down and let this cancer win, even if that's how I've felt some days.

"This is true love" she says, and "love wins every time".

This year the rollercoaster has continued with ups and downs. The diagnosis continued to get worse with extended stays in hospitals, infections and the cancer spreading to my bones, blood and almost every organ you can think off. When I get a scan, I light up like a Christmas tree, but with the lows came the highs.

Robin and I got married surrounded by so much love from our family and friends, then we went off on a whole family honeymoon to America; I've been to Greece, Athens and Croatia ticking things off my bucket list.

After their wedding, Robin and Sean enjoyed a family honeymoon, ticking a series of destinations off their bucket list.
After their wedding, Robin and Sean enjoyed a family honeymoon, ticking a series of destinations off their bucket list.

Like I said my life has been turned around for good and for bad,

Fast forward to August 2019, just last month….

So, I wrote everything so far around February this year, summarising how I felt at the time.

What's happened in the last couple of months is that everything has gotten much more serious.

Medical numbers are very ugly and the words "imminent death" (I'm not kidding) follow me from well-meaning doctors and nurses who show me the numbers and say, "hang on you should be dead" and, "you may not make the night or the weekend".

Given that sense of "urgency" I've crystallised what are the wonderful bits about getting a terminal diagnosis - and it's not dying but living an amazing and life filled with gratitude. One day of really living is worth years of serious unhappiness, which unfortunately is what most people go through.

To summarise broadly you get to say things, do things and be with people that you may never say in your life. Here is a rundown ….

I've had people come out of the woodwork, people I haven't spoken to in years. People who I was close to but have drifted away. People who have been simply able to tell me the impact I've had on their lives and vice versa, and that alone is massive. My approach now - is call someone today.

What are the reasons getting a terminal diagnosis is good?

My intensity of love for Robin has deepened and grown exponentially. I think this is self-explanatory but to see someone fight for you so much makes every day just that little bit more amazing. From this?? Go hug your closest and look for the good in them.

A terminal diagnosis gives people an opportunity to be kind and do kind things. One of the first things we noticed was that friends and family don't get a ton of opportunities or are even looking for ways to be kind every day. However, people really want to do kind things. A cancer diagnosis brings out this need within, and everything from visits to meals, to presents, to just offering their time. It's amazing the love and desire that shines through from friends, that is in all of us now, even if you don't know someone with cancer. Showing kindness and love to all the people around you will draw out those deep-seated feelings in them and you. So, give now before it's a reaction to someone's cancer.

It makes you realise how meaningless so much of life is and assess carefully what you are doing each day.

Sean says a positive from his cancer diagnosis is getting to experience the ferocity of Robin’s love for him.
Sean says a positive from his cancer diagnosis is getting to experience the ferocity of Robin’s love for him.

Let's face it, most of us are quite miserable in our current roles. At the heart of this, I think is we realise how meaningless (not monotonous or many other boring adjectives) much of what we do is. It's not easy to change particularly with heavy responsibilities, but my god it is worth thinking about and moving over time to change.

The diagnosis has seriously deepened my relationship with my kids. We all have experienced the danger of over-mothering or over-fathering our children. Mine have risen to the occasion dramatically and we have had so many deep chats and discussions we wouldn't normally have had. I guess out of this says let them grow and be grown up. It's hard sometime but beautiful to watch.

The diagnosis has opened a whole new chapter with the boys. Robin has 3 amazing sons who I have become close to. This one is tricky as their birth-dad died, and NOW their stepdad is dying. They are probably going WTF! To their credit they are trying to find a way and connect with me even for a short period. It's been quite beautiful, particularly with the youngest Piper. We are tight-as, and he wants to know more, to dig deep and get to know me. Where-as their birth-dad was gone overnight, they are working hard to connect and find a place with me, which a been a whole other joy.

Masculine (non-sexual) love is one of the best expressions of love ever. There is a lot of talk in the media particularly about the importance of men speaking out about how they feel, that it's OK to show vulnerability. This diagnosis has brought home to me how important man-to-man relationships are. My close guy friends grab and hug me now and you can feel they mean it. And some can't. This feeling has been so hard to put into words it's indescribable. It's unique the feeling of one of your great mates hugging you and meaning it. There is no shame in having great male friends who can cry, laugh and hug it out. The ability to hug another man and really feel that love and connection on a friendship level is important. My friendships have deepened on an indescribable level. Let your buddies in to your heart, if they want it. There is power there, and it's growing for men. Who knows it could even solve our problems with suicide?

Being Grateful

To wrap it up, a terminal diagnosis definitely brings your focus into every moment.

Living in the now has become a cliche but try getting a terminal diagnosis baby … you start living right now.

It makes you grateful for everything, and we bloody well should be.

Take time every night to say thank you. It's hard to describe what a difference this makes.

It's a journey and blessing for those around you as well. You are going through it, but you soon discover so are those close to you. What they learn is so important to their life journey.

Let's be clear. I don't want to die, but I will, and perhaps quite soon. There's an inherent, self-preservation in us all, even with a diagnosis such as mine, because you never think you're going to die.

As every day goes by, I get more life to live, more joy, and you appreciate time.

It teaches you to fight and answer the question "am I worth fighting for?" Sounds incredulous but I'm guessing almost everyone goes through it. Our self-loathing and lack of self-love made me question if I was worth the fight.

At first, I genuinely wasn't sure but Robin's amazing love, and that of family and friends convinced me I was, and from that moment I've been in fight mode. But I had to go through that deep questioning of my self-worth.

So, I pose the why question. Why does it take someone with a terminal diagnosis to make you realise all the things you should have done years ago?

Let's not sugarcoat this though. This shit has a crappy ending. This toxic and venomous cancer is destroying my body but what has come from this journey is almost impossible to really describe. I hope my words can inspire you to take some action now, before it's too late.

 

SEAN PICKWELL

Dad and husband