Kristin Hallenga, 37, attended her own funeral with friends and family: "There were 160 people, and I was in the front row, trying to absorb it all." Photo / Getty Images
I was 23 when I was diagnosed with stage 4 cancer – 14 years later, I’m throwing myself a ‘living funeral’.
The invitations were sent out inside little cardboard coffins. Inside each was a test tube of tequila and a letter explaining what I was trying to do, with the date – June 10 – the venue – Truro Cathedral – and the dress code, which was YODO – You Only Die Once. People could take from that what they wanted. Was there an outfit they’d always felt too scared to wear?
Or something they’d worn once and always wanted to wear again – a couple of people came in their wedding dresses! I’d had the idea for a living funeral – I call it a FUNeral – in January. As someone who has been living with stage 4 breast cancer for 14 years, and who founded a cancer charity, I’ve been to a lot of funerals.
The most recent was for my friend Sarah, in Brighton. It was a beautiful day, she’d planned everything right down to the drinks and the eight-hour playlist, and everyone kept saying, “Sarah would have loved this.” I came away wondering, “Why did we wait for her to die to have this real celebration of her?”
From there, I started to think, “Wouldn’t it be good if I actually had a funeral before I die, to put my mark on that day and be there to enjoy it?” My mum wasn’t hugely surprised – she knows I’m always going to do things differently.
My twin sister, Maren, is always going to be supportive – she’s the best human you can think of. Her reaction was, “Well, I guess I’m helping you organise this thing, then!”
I did have a conversation with someone before the event who asked, “Why do you feel the need to call it a ‘living funeral?’ Why not just call it a party?’”
For me, there needed to be a sense of urgency here and a real level of importance. I don’t think some of the people who flew over from Canada, California, New York and France would have done that if I’d just called it “a party”. The whole day was pretty standout for me.
There were 160 people, and I was in the front row, trying to absorb it all. I wore a 1970s-inspired silvery, glittery jumpsuit and a black glittery jacket customised with feathers on the sleeves and the word YODO on it. A gospel choir kicked the day off at 3.30pm and my gorgeous friend Georgette was the MC.
One thing that I can’t get over is that I managed to convince Dawn French to come as the Vicar of Dibley! We’ve connected before, she’s also based in Cornwall and a brilliant human being. She did this skit at the start where she has come to the wrong funeral. She talks about the wrong Kris – this guy who will be very much missed, but had been on a killing spree when he died. That was hilarious!
An amazing friend did my eulogy, which was one of the most beautiful things I’ve ever heard. Others gave speeches. There was a performance from my friend the singer-songwriter Rae Morris. Another friend, Rob Broderick, an improv Irish rapper-comedian, turned my eulogy into a song.
Everything was deeply emotional, but we prepared people for that. We’d put tissues on all the tables, we had tequila on tap if people wanted it, and the MC kept reminding everyone that if they needed to go outside, get some fresh air and walk around, they could. Crying was allowed, everything was allowed.
The event went on until 1am. We had a 20-piece orchestra, a DJ, big-band tunes, a silent disco. It was very, very surreal. I felt like I was on another planet.
The cancer is quite widespread in my body, it has spread to my liver, bones and brain, and I’m currently on IV chemotherapy.
The day before the event, I was feeling pretty awful – but on the day itself, I just felt so good. For some reason, the cancer allowed me to have a day with no pain, no struggle.
There were so many meaningful reunions. So many joyous moments and memories were brought to life again. I was 22 when I discovered a pretty large lump in my breast.
A GP put it down to hormonal changes, so I went travelling for a while, and it was only later, on my third appointment, that I was finally referred to a breast clinic. There, eight months after my first visit to the doctor, I learnt that I had stage 4 breast cancer. It had already spread to my spine.
Thankfully, I had a consultant who didn’t put any time-limit on my life. I don’t think anyone should. There are “statistics”, but no one is a statistic. With cancer, you’re in this system of treatment very quickly and that plan of action is what you focus on.
During that time, I couldn’t help thinking that this shouldn’t have happened, and that there should be more education around cancer for young people. That’s when I started CoppaFeel! – a charity to raise awareness amongst young people and empower them when they’re seeking help.
I didn’t realise it then, but that was an outlet for my emotion, it was a purpose, a focus that made me feel more alive than ever. I was a workaholic, we had some amazing, huge campaigns, but the thing I started gunning for was to get cancer on the PSHE [personal, social, health and economic] school curriculum.
We’ve got that now. I’ve never grieved the loss of my “former life”. I’d never wanted children or had a big future planned out before me. At just 22, before my diagnosis, I was very unsure of myself – “What is life? Who am I? What the f---!” – so I can’t say cancer has stopped me from doing this or that.
I’m often asked about finding a partner after a diagnosis, but cancer hasn’t made me think I’m any less able to blame in a relationship, it just hasn’t been a focus. I’m single now, but I’m not sure if that would have been different if I hadn’t had cancer.
CoppaFeel! is still running today with an amazing team and a brilliant CEO. It’s always going to be my baby, but I’ve stepped away to live in Cornwall, be near my sister, by the sea and focus on the things that bring me joy. I blog, I’ve written a book, I do a lot of reading, and my sister has a child now, so I spend a lot of time with him. I was at the birth, which was incredible to witness.
He’s three now and a real reassurance to me that life carries on when we die. I like to think that if I hadn’t had cancer, I’d still have found the same level of self-acceptance, this love of life and focus on what really matters that I have now. It’s impossible to know.
A lot of people are riddled with fear when it comes to talking about death. We’re very quick to shut down difficult conversations and most of us are unaware of the kind of funerals that the people we love would want. When I had the idea for my living funeral, I came across Legacy of Lives and wrote to them to see if they could help.
The founder, Rebecca Peach, called me back straightaway and I was blown away by what they’re trying to do. It’s an online platform that gives everyone the opportunity to write down their wishes in a really simple way, to plan a funeral, compare prices and have some meaningful discussions.
All feelings were allowed at my funeral and that was the point – it was a day where we allowed ourselves to feel all feelings about life and death. I’ve really struggled to sleep since – I think the adrenaline hasn’t come down. I’m not sure what’s next for me, as I’m not one to plan far ahead. I was trying to quieten my life down a bit and keep it simple – but it’s hard to say that when I’ve just pulled off one of the most extravagant events of my entire life.
As told to Anna Moore
At 59, the Kiwi actor hopes to help shift the discourse around women's health.