The Endfluencers: Marie Curie launches powerful documentary championing young people with terminal illness

Doncaster Free Press

The Endfluencers: Marie Curie launches powerful documentary championing young people with terminal illness.

Transcript

00:00I started having symptoms which were really severe that would wake me up in the middle of

00:12the night and then I started having trouble with my vision and had a CT scan and then they told

00:20me the news that there was a mass in my brain that was the first time I kind of heard the word

00:25tumour and cancer it was all happening very quickly like an out-of-body experience after a

00:33year of pretty hardcore constant cancer treatment now I actually live a pretty normal life my body

00:41was really really strong going into brain surgery we had a follow-up appointment and that was the

00:47first time I was told that I'd have about 15 years left to live that was the first time it really

00:52hit me that I was one of the unlucky ones whose life would be cut short by cancer I was working

01:00as a social media manager I'd make content about the kind of struggles that I've lived with and

01:05overcome in the past like mental health struggles alcoholism to offer other people hope make them

01:12feel less alone I started sharing my journey with terminal cancer I've always been very open online

01:18I do show the highs and the lows I think it's important for young people to know that it's not

01:27game over straight away it may not be the life that you envisioned or hoped for but you do learn to

01:33adapt I'm currently writing a self-help book about self-destruction and how not to self-destruct I do have a

01:41future I have so much more to do and so much more love to give and to receive you can still live a life

01:53I have a progressive condition called Ehlers-Danlos syndrome which meant I essentially grew up able-bodied

02:00I found sailing when I was 13 and then I haven't stopped since from that first day on the water sailing

02:11gave me pure freedom so I've just completed a circumnavigation of the UK and Ireland I set the

02:20record as the first female and the first disabled person to do this solo and non-stop and unassisted

02:25the hardest thing I've come across in my journey that has sort of challenged has been people's

02:30opinion people have very preconceived ideas about what being disabled looks like what being a female

02:39looks like and what living with a life-limiting condition is I'm actually the most unnatural

02:45person on social media I do it because I didn't see anybody like me out there I hope by sharing my

02:51story maybe someone will feel slightly less alone when they might face something similar I want to

02:59show that there is more to terminal illness than simply dying making the decision to pursue end-of-life

03:05treatment was one of the hardest things I've had to face but it has also been one of the most liberating

03:11decisions end-of-life care just means you're prioritizing quality of life over quantity of life

03:18it was about everything from making me comfortable to ensuring I could chase dreams whatever I wanted and

03:28for me go sailing be at home and spend a lot of time with my dog the decision I made was I would

03:35plan as if I have forever but live as if I have today life gives you two choices you can face

03:42everything could rise or forget everything can run so in the face of a life-limiting condition I

03:48decided to buy fear and try and sell around the world five years ago I was teaching fitness classes I

04:01was also starting up just a little social media channel to fill in the rest of the wallet I would

04:07do medical trials by freakish look I was doing an MRI from my head and within that they were able to

04:14discover that I had what was titled as a benign tumor I'm gonna have my second scan they said no

04:21this is growing this is not benign this is going to require a surgery and so that's where it all

04:25started off and I never focused too much on the actual cancer itself it was all just kind of how can

04:32I get around these other problems that I'm gonna face it didn't take everything away they leave as much

04:38of the tumor there as well because it's still functioning that's part of why it's a terminal disease

04:42I just made the switch to my social media channel being about raising money for charity it was just

04:50like okay that is now my entire life's purpose my only life goal the actual thing that matters to me

04:56is to break the charity world record for raising the most amount of money ever for running a marathon

05:00it's not to have followers the reason that I started talking about how my illness is terminal

05:06was to create a movie story within my own life I knew that the story of a young man having a terminal

05:12illness and having to fight against this monster that is cancer is something that people would back

05:16what I kind of hope that other people get from this is to be a bit more tolerant of the hardships

05:21that life will inevitably hit every single one of us I don't think I've changed nothing that's

05:27particularly profound my life has a lot of meaning now which is fantastic well in a lot of ways that

05:33is not because of getting cancer it's more because of the opportunity that getting cancer has presented me

05:38with what I would like other people to understand is simply that not everybody deals with death in

05:45the same way the responses that I get on my stories are amazing I get very little negativity on social

05:51media so yeah I'm I'm the one in a billion

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