What would you do if you had incurable cancer?

Jolene Dyke is 31, has a high-flying job at the Royal Opera House, runs half marathons and travels the world. She also has malignant melanoma and was given months to live eight years ago. She reveals here how she has defied all odds.

Louise Haywood-Schiefer

I had been due to leave for university the following day when I got the call from the doctor asking me to come in about my mole. I’d had it removed because my mum thought it looked dodgy, but I didn’t think much of it. I can’t remember a lot about that day, just hearing the word ‘melanoma’ and, later, crying to my dad on the phone. It’s amazing to think how much has changed since then. I put off going to university by a year because I needed to process the diagnosis. Doctors did a wide local excision of skin from around my neck area, where the mole had been.

I thought that would be that, but in 2010, around the time I graduated, after doing a four-year course [in Drama and Theatre Studies at the University of Kent], I started to feel unwell and noticed a lump on my arm – it was the melanoma coming back. Shortly after, I had tumours removed from my brain and lungs. Since then, it has been a case of whenever something appears, cutting it out and hoping for the best. There is no cure for my cancer, just treatment to manage it. At first, nothing worked – chemo is known not to work well with melanoma, though I have had it – but in the past few years new immunotherapy drugs have emerged that are good at containing it. So while I have been unlucky, I feel fortunate that I didn’t get it any earlier, and that it has spread slowly, allowing time for these drugs to become available; without them, I wouldn’t be here now.

Since my diagnosis, I have worked as much as possible. After uni, I took a marketing job at the Theatre Royal in Windsor, and would commute there four days a week on the train, fitting that around surgeries to remove various lumps. I was so tired that I slept solidly both ways, but, mentally, I needed to work. Having to take six months off when I was recovering from my brain tumour was awful; all I could think about was how much I wanted to get back to the office. I’ve always loved the theatre. I started front of house at Royal and Derngate Theatres in Northampton when I was 16. I took a job at Rambert Dance Company a few years ago, which led me to Sadler’s Wells. I am now the opera press officer at the Royal Opera House (ROH). I love the buzz of theatre – it is a form of escapism and just what you need when going through treatment.

Starting a new job at the ROH in January gave me a huge boost. The fact that I am capable of working full-time makes me proud. My treatment means that I cannot have children. Marriage is not an option either. I never date, as I feel it wouldn’t be fair. I don’t want to get hurt or to hurt someone else, and how would I have that conversation? But as long as I am working, I feel I have a path and that there is an area of my life in which I can progress. I haven’t reached a dead-end yet! And I have no intention of giving up. I was totally honest about my diagnosis with everyone in my team when I started my job – it’s much easier to be upfront than to have to explain everything as you go along. Everyone has been amazingly supportive and the ROH gives me the flexibility to work from home whenever I need to. I don’t want to hide anything, but I also don’t want to talk about it a lot. Cancer is always with me – but I need an escape from it, too. I don’t spend a lot of time with other people in my situation, because no two cases are the same and I would rather get away from cancer when I socialise.

It’s rare that anyone in my family will break down or get emotional about my experience. We have an unspoken understanding that I’m strong for them and they’re strong for me. They’ve all been amazing, including my younger twin brothers, who are only 17. My elder sister has had to do ‘tough love’ with me at times. She’ll say, ‘I wish I could change this for you or tell you that it will all be ok , but I can’t. You just need to be strong and keep going.’ I find that approach helpful. I have all my cancer treatments in Leicester – the closest hospital with a melanoma specialist to where my parents [who are divorced, but on amicable terms] live in Northamptonshire. My mum, who is retired, always comes with me and my dad does as often as his schedule as a secondary school maths teacher allows. We have little rituals that make hospital days bearable – such as going for a jacket potato first. And humour is essential.

My friends have been amazing at supporting me. I’ve just moved into a flat in Northeast London with my friend Lucy. I love it. We do normal things such as order pizza, watch telly and cook supper for each other. It’s great chilling out with my mates and talking about silly stuff. I’ve never enjoyed alcohol. I might have a glass of bubbly at a friend’s wedding, but I hate the idea of wasting a day being hungover. I hope my friends never feel they have to tiptoe around me. Sometimes I get annoyed when people stress about small things, but I also relate. Getting locked out of the house is upsetting, and if that’s the worst thing that happens to someone, I am happy for them; to be honest, I stress about that sort of thing myself. A few years back, I was on a kind of chemo that made all my hair fall out. I wore wigs and hair extensions and had to have eyebrow tattoos. It was difficult, but life became a lot simpler. I was with a group of friends on New Year’s Eve with everyone talking about what they wanted in the year ahead and I could genuinely say, ‘All I want is hair – and to still be alive.’ I love having hair now – I never take it for granted!

Some people keep their cancer diagnosis private, but writing a blog has been hugely beneficial to me. I started it in 2016 because I thought that writing would let me process things, allow my friends and family to understand my experience and help other people with cancer. If even one person feels less alone because of it, then that is amazing. Often something happens and I think, ‘Other people must feel this way, too.’ One example is the bells ringing on the chemotherapy ward of the hospital when someone finishes treatment – it’s a tradition that you get to ring a bell after your last session. But what about people like me, for whom treatment will never end? I will never ring that bell, and while I’m happy for the people who do, it’s hard to hear.

The fact that I don’t look ill right now is wonderful, but it also makes it harder for people to understand how serious my condition is. Because I get so tired, I wear a badge on public transport that asks people to offer me a seat. People always look so confused. I can’t tell you how many times I’ve been asked if it’s because I’m pregnant – I wish! You never know people’s stories, and there are so many ‘hidden disabilities’ out there. I’ve recently started cognitive behavioural therapy to help me comaccept this problem I can’t fix. It has taught me that, while I can’t control my diagnosis, I can change my mindset. I think a lot about how if I didn’t have cancer I wouldn’t be writing my blog, which brings me joy. The physical challenges I have taken on to raise money for cancer charities have made me feel great – and given me an amazing focus. Last week I ran the British 10K London run and in April I took part in the Lake District Five Peaks Challenge to raise funds for cancer charity Trekstock. It was a 14-hour hill trek and the toughest thing that I have ever done. I was going to do it alone, but Lucy and her friend Jesse signed up, too; it was such a bonding experience. I feel that while I am well enough, I must do these things!

The same goes for travel. Rather than lamenting the fact that all my friends are getting married, I am making the most of being well enough to fly to weddings abroad. This summer, I am a bridesmaid in Thailand and America. As I don’t have to worry about a mortgage or pension, my savings are for seeing the world. I went to Australia a few years ago to visit friends and I’m so glad I did it while I was well enough to handle the long flight. Even in my worst year of being unwell, I went abroad about six times, and, amazingly, I’ve never cancelled a trip. I have also learnt to take things one day at a time. Recently, I had three days in a row of appointments – a scan, blood tests, treatment and seeing my doctor – and it made all the difference to take each day individually, rather than panicking about a three-day period of hell, which may have felt insurmountable.

I have a scan every three months to check that everything is stable, and there is the most amazing sense of relief when the oncologist tells us that the cancer hasn’t spread. I look at all the dates in my diary – which I worry I might not be able to do – and feel a surge of happiness that I can fulfil them. Of course I hope that new drugs will come along to stabilise my condition even more – and there is every reason to think that they might – but I can’t count on it. My illness has taught me to live in the moment.

Maureen, Jolene’s mother, says…

Jolene’s outlook on life, the way she seizes each day, has totally inspired me. If I am in a relationship where I am not completely happy, I get out, because life is too short. I go with her for all her treatments, and although it’s often a ten-hour day, we spend a lot of time laughing. They say that laughter is the best medicine and we find humour in little things to get through it. Jolene’s father is often there, too. Once a nurse referred to him as my husband, and even though we have been divorced for ages, I didn’t mind. We all pull together for her.

Sam, Jolene’s school friend, a nurse, says…

As a society we are so good at saying, ‘I’ll do that some day’, but why is it ‘some day’? Why not now? That is what Jolene has taught me. I’m not a runner, but I’ve agreed to do a half-marathon with her later this year, because if she can do it, why can’t I? Sometimes I have to put my nurse’s hat on and rein her in, because she is so ambitious. When she wanted to travel to Goa, I had to point out that she would be a long way from medical facilities. It’s important not to constantly ask her how she’s feeling. She doesn’t want to be treated like a patient or have cancer define her.

Caroline, Jolene’s former work colleague at Sadler’s Wells, says…

Jolene’s enthusiasm for life and for taking on challenges is infectious. She is so inspiring and even managed to persuade me, and a few others from the office, to run a 10K with her! In one way, her illness may have helped her career; it has made her more determined about everything. She has a great relationship with the journalists we work with and has kept all her friendships at Sadler’s Wells going. She lives life to the fullest and doesn’t let cancer stand in the way. Whenever she took time off work for treatment, she came back even stronger. Jolene also has a wonderful sense of humour about absolutely everything, from the things that go on in the office to the challenges that come her way with cancer.

Lucy, Jolene’s flatmate and school friend, says…

Jolene is so strong that sometimes you forget she is ill. My instinct is to want to take care of her, but she would never allow that! If I cook supper for her one night, she will make sure that she returns the favour promptly. I find myself having to tell her to take it easy and not push herself to go to the gym when I can see that she is tired. Her energy amazes me. The best thing I can give her is the mundane: watching a film, having a laugh and eating popcorn on the sofa. Jolene just wants life to be normal. I wouldn’t want to live with anyone else.

Keith, Jolene’s father, says…

Jolene has an inner strength that I think comes from having been a very premature baby. She was given a 40 per cent chance of survival, but she pulled through. Fighting the odds is in her nature. She has been doing it all her life. She inspires us every day with her strength. My 17-year-old sons have learnt so much from her; seeing what she has faced, and with so much grace and dignity, has given them a layer of sensitivity and enabled them to help their friends through hard times.

Will, one of Jolene’s younger twin brothers, says…

Jo’s diagnosis has given my brother Jude and me a perspective that a lot of people our age don’t have. We have a strong sense of what is worth worrying about. With exams, I thought, ‘I’m not going to stress about this too much. There are bigger things.’ Her illness has brought us together as a family – we’ve done countless half-marathons. In 2015, I shaved my hair to raise money for charity and support Jo while she didn’t have hair. She is supportive and fun. She took my twin to a wedding in Stockholm last year and they had a blast.

To learn more about Jolene’s story, visit melanomajo.com. Trekstock is a charity that supports people in their 20s and 30s to get moving again when cancer puts their lives on hold. To find out more, go to trekstock.com/accept.