youth cancer europe Archives | Youth Cancer Europe (YCE)

During last weekend’s fourth edition of Untold, Romania’s largest electronic music festival, some of the world’s biggest DJs including Armin van Buuren, Afrojack, Kygo and Danny Avila greeted youth cancer survivors from five different countries in meetings organised by Youth Cancer Europe, who specially flew the young adults in for the occasion.

A group of survivors from around the continent, aged 18-26, were given the opportunity through a social media competition organized by the charity for its network of cancer survivors, which included representation from Spain, Northern Ireland, Poland, Macedonia, and Romania. Afrojack was the first to meet the group backstage during Thursday night, while Armin Van Buuren took photos with the survivors before taking to the stage at Cluj Arena for a mammoth 7-hour headline set that wrapped up the festival. Spanish DJ Danny Avila also wore the “F*** Cancer” bracelet given to him by the group during his Saturday night set, taking to Instagram to share a photo and recall the meeting as “unbelievable”.

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Previous meet-and-greets organised by Youth Cancer Europe for its network of survivors include Martin Garrix, Hardwell and Dimitri Vegas & Like Mike.

Katie Rizvi, CEO, and Founder of the Youth Cancer Europe Foundation said: “Once again, we were lucky to secure the opportunity to invite youth cancer survivors from across the continent to meet some of their heroes at the incredible Untold Festival in Cluj-Napoca, Romania. Afrojack, Kygo, Danny Avila and Armin van Buuren took the time to speak to each of our guests individually, take photos and sign autographs for them. These are memories that they will cherish forever and we’re always over the moon to bring these experiences to them. A huge thank you goes out from us to the DJs, as well as to the team at Untold for all their help in making this happen. Until the next time!”

Youth Cancer Europe would like to thank the UNTOLD festival for providing access to the festival and to Ecolor manufacturing and the Swedish Consulate in Cluj Napoca for sponsoring the travel and accommodation of visiting youth cancer survivors.

On May 20th we’ll be landing in Brussels for a weeklong event on The Fundamentals of EU Policymaking. Participants from 15 countries will partake in intensive workshops that will look at how the European Parliament works, what role do parliamentary committees play, what is the European Commission’s role and how does policymaking happen and why does it matter to us. This will include a workshop with a former minister of health as well as discussions with experts in global health policy.
The workshops will be followed by visits to the European Parliament where participants will meet with a Member of Parliament to gain practical insights. This will be complimented with an opportunity to grab first-hand experience of all levels of policymaking by meeting with a variety of stakeholders from permanent representations, industry associations, chambers of commerce and civil society organisations; the highlight of which will be our meeting with the team of commissioner Vytenis Andriukaitis (DG SANTE).
The Fundamentals of EU Policymaking takes place May 20th-24th in Brussels, Belgium. Follow our social media channels for more information and updates during the week!

Robin, from Sweden, was diagnosed at the very early age of 9. In this interview, he tells us about his cancer journey, his experience with his doctors and how that shaped the person he is today. Robin is an active collaborator of the charity Ågrenska. He regularly visits hospitals where he talks to childhood cancer patients about his own experience, in addition to organising two charity golf tournaments of his own. Find out more about Robin’s journey in this video

Huge congratulations to our winners! We look forward to welcoming our survivors Magdalena (Poland), Jarly (UK), Bojan (Macedonia), Andrea (Spain) and Radu (Romania) and their guests to Cluj-Napoca this August for UNTOLD Festival! Thanks again to the promoters, and if you weren’t lucky this time keep an eye out for future opportunities. More to come soon!

Finding Out About Late Complications

Erik is a young cancer survivor from Sweden. Like many other survivors, he has faced the difficulty of late effects as a result of his cancer treatment. While this is a very common issue for a large number of survivors, it is still a taboo subject that patients are often not informed about correctly. As a result, many survivors are then caught off guard with these, often years after their cancer treatment has been completed.

For Erik in particular, this has also meant having to deal with mental health issues such as depression and anxiety, which are only exacerbated by the confusion and lack of information surrounding late effects.

Today, Erik is a strong advocate for Youth Cancer Europe’s cause, actively participating in meetings and workshop both across the continent and in his native Sweden. In this piece, you can read more about Erik’s fight with late effects and dealing with mental health as a cancer survivor. You can read more about his story in his personal blog here (in English and Swedish): https://www.livetefterbarncancer.se/en/erik-sturesson-cancer/

Getting over my cancer treatment with group therapy

Last year in Stockholm, I attended the second session of group therapy organized by the Swedish Childhood Cancer Foundation and its project, Maxa Livet. We’re part of a pilot project and we’re a reference group. Some members are here just because we need enough people to actually have group therapy, which I’m grateful for, seeing how others, like me, are here because we need it.

I have tried regular therapy before, but it wasn’t for me. I didn’t like the idea of group therapy either; I was a very closed person, I didn’t want to share these things with a group of strangers like that. I didn’t even post images on Facebook before 2017 – essentially the only posts I’ve made have been when someone had a birthday. Regular therapy didn’t work either; I always felt like they didn’t understand the issues I was dealing with. I mostly got the “be happy you’re alive” response.

Consequently, I never managed to get over my chemotherapy treatment mentally, and every time I’ve been fatigued since my treatment, it’s been following the same pattern. I’m active, almost like normal, then I get more and more tired, I become inactive, I get anxiety attacks because I feel trapped in my own body, and then I become depressed. My latest depression was unlike any of the others though, due to its cause. In my opinion, due in large part to being a physician’s pharmaceutical error.

Yet, in many ways, this depression could be one of the best things that has happened to me. It was the price I paid to see how bad the support survivors receive in Sweden is. It made me realize that although I’ve been surrounded by a lot doctors with a very wide variety of disciplines, they never told me the truth, mostly because they didn’t know the truth themselves. Either way, I never got the information or help I needed, and which I didn’t realise actually existed.

The revelation of learning about “late side effects”

I’ve always known that I got all these side complications from the chemotherapy or from cancer itself; it was the only logical reason. But as I’ve said before, there’s nothing in the media, anywhere, about this, let alone any information on how common it is. Not a single physician ever mentioned late side effects, not even my adult oncologist. Fine, I knew the cause of my issues. It’s pretty simple: all I’d do is look at my life prior to and after cancer. Before cancer I was athletic, used zero drugs, including alcohol. Would I take 14 different substances every day today without the cancer? No. However, simply knowing the term “late complications” put things into perspective. It made me realize I’m not alone or in the minority. Why then, has the system been so terribly bad when it comes to our treatment? Because it’s taboo, that’s why.

I was always a special case; eventually I got used to this sort of reasoning from my doctors. My endocrinologist had me do tests so rare that they only did them roughly twice a year, meaning the nurse had to read the instructions before performing the test. I got used to it. Then, I got this depression and at the same time, the Swedish medical system started to change, ever so slightly, for survivors. Not for those like me though, who already had vast health issues, a fact that was made abundantly clear in a radio interview I was involved in. One of the participants in this interview was my old child oncologist. He stated outright that these steps being taken now are not for people like me, who are already ill from the chemotherapy treatment. It’s for the next generation of survivors. I know this is something that frustrates him. Sweden have had the knowledge and means to care for us survivors, but chose not to.

I wasn’t just waiting around, doing nothing

I sometimes blame myself for ending up where I am now. I feel that I should have read more about these issues myself. I couldn’t, though. It simply made me depressed to look these things up. Adding to this, every time I saw something, it was always a positive read; they had no issues at all – seemingly. I didn’t bury my head in the sand for ten years, but I trusted that my oncologist would actually help me if she could, or send me to someone else who could. I mean, it’s Swedish healthcare. It’s supposed to be great. She didn’t however, because it wasn’t in her job description up until that point, in 2016/17. That is what she said when I confronted her, regarding why it had taken so long.

Nevertheless, at least I know the facts now. Without this depression, I would have never started to blog, never gotten in contact with the Maxa Livet-project, never gone to Lithuania for Youth Cancer Europe. I would be studying or working, until I got my next fatigue-episode and crashed. Now, I’m trying to adapt, to learn more about fatigue, what I can and can’t do.

Yet, it seems cruel that all survivors in a similar situation such as mine should find out in the manner that I did. I had a very severe depression; I never did hurt myself, but I was suicidal-in-thought for a while. All this happened to me because of ignorance, incompetence and a lack of transparency, lack of awareness.

If only there were some sort of network, with cables around entire nations, or even around the globe, through which journalists could broadcast audio… and if one dare to dream, audio, video and text via special devices that could display and reproduce these sounds. And then, you could have some sort of news on these devices, daily. Where important events and facts could be presented to the audience. As a means of public service. If only that existed…

As for my depression; a forest fire is devastating to the life living there, but afterwards, life is reshaped and flourishes. This is what happened to me. I burnt down to the ground and I’m trying to reshape, re-focus on what’s important. Rising from the ashes, as it were.

Cancer patient and YCE ambassador Kasia, from Poland, joined us at our latest annual meeting in Vilnius, Lithuania. In this interview, she tells us more about the issues around cancer treatment and lack of patient information in Poland, as well as the difficulties in accessing additional support from specialists in smaller towns away from the capital. Kasia is currently fundraising to pay for surgery in Germany as other therapies in her native Poland have so far not been successful. You can join Kasia’s fundraiser here http://rik.pl/katarzynawalinowicz/

 

Meet cancer survivors and YCE ambassadors Dusan and Milos. Both survivors of childhood cancer, in this video they discuss the lack of information available to young cancer patients in their native Serbia, as well as the stigma and misconceptions around cancer in society. Both Dusan and Milos represent the amazing Serbian childhood cancer organisation called MladiCe

Fay, hailing from the UK, has written this beautiful piece for the Youth Cancer Europe blog which we’re very proud to host. Entitled “To The Next One”, Fay’s blog is a letter written for the next young person to be diagnosed or currently going through cancer treatment. It addresses the questions, fears and different emotions that young people living with cancer face following their diagnoses, offering advice and perspective from a fellow former patient that shows that you are indeed not alone in your fight. A thoroughly recommended read not only for patients and survivors, but also for those who wish to gain a little more understanding of a patient’s journey. Fay, thank you so very much for your collaboration.

To The Next One

This is to the next one, the next young person told they have cancer. From someone that survived, I want you to know a few things I worked out during my treatment and in the years since.

You won’t understand everything straight away:

Whether you’re 15, 18, 22 or 28, you won’t understand everything you’re told. To begin with, you will probably struggle to get your head around those words, no matter which way the consultant approaches it. It will take some time.

You’ll be confused, scared, probably unsure of what to expect and you’ll also have many questions, even if they don’t come to you until you’ve left that first consultation. You don’t have to remember them straight away; write down anything you’re not sure about and ask your consultant, nurse or support worker when you next have a chance.

This is your journey, no one can tell you how to deal with it.

Sure, it’s not what you wanted, expected or planned for and it’s rubbish. Unfortunately for people like you and me, we have to deal with it and no matter what your treatment plan, prognosis or diagnosis, it’s your journey. It won’t be the same as the person next to you with exactly the same diagnosis.

You’ll find as you start treatment or other procedures, you’ll go through a lot… shock, fear, confusion, anger… that’s ok. All of these are a normal response to an abnormal situation.

Don’t try to conform to what the people around you, or even yourself think you should be feeling or doing; you have to do what’s best for you during this time. If that means to ignore it when you’re not in the hospital and carry on going to work, school, college or university then go for it. If it means staying in bed on some days because you don’t know how to face the world just yet… that’s ok too.  Though I’d advise to at least try to get out the house every couple of days, even just for a coffee or to see a friend. Try not to shut yourself away for too long.

You’ll go through stages at different times and no reaction is wrong.

Side effects are rubbish and you will probably at times hate them more than you hate cancer.

Some of the most noticeable side effects you might have to deal with are hair loss, weight loss or gain and the dreaded sickness. For many cancer patients, hair loss is inevitable; when we live in a world where growing up has become so much about the perfect selfie, losing your hair can be devastating, and you’ll likely cry (yes boys, I’m looking at you too, it’s just as traumatising for many males as it is for females.)

Just know… it doesn’t have to be the worst thing ever. Wigs are amazing nowadays, so good even that you often can’t tell – and you can have some fun with them too! Ever fancied trying bright red hair? Rainbow? I’m sure there’s a wig for all of those wacky styles you always wanted to try. Losing your hair will knock your confidence in a lot of ways. Try making a list of all the other features you like about yourself or the things you can do that make you feel better about how you look. On my list were my eyes. I also like to wear jewellery, especially bold necklaces; it just gives me that boost.

Weight gain and loss can also impact how you feel about your body image during treatment; just know that as much as you might not like how you look right now, you’re beautiful, handsome, whatever word it is that makes you feel good: you’re that. Your looks will change – for some dramatically, for others not so much. This can include scars too; I kind of see my scars as a collection of what I’ve overcome. Yes, I look in the mirror and sometimes wish they weren’t there, but they make me unique and they’ll make you unique too.

It will be hard and you’ll want to give up at times, you’ll want to pull out the drip, throw away the tablets and give in – I get it. You don’t want to feel sick or be in pain anymore. It takes strength, a strength you’re not sure you have but it’s in there somewhere. You can do this even if you have to take it a day at a time.

The What Ifs:

Let’s talk about the “what ifs”. The one thing most people are reluctant to discuss with you, your family or friends might shy away from the subject, but you will have those thoughts. What if I don’t make it? What if I go to my next scan and the treatment isn’t working? I’m not going to sugarcoat it, it’s a possibility and I would always be the first person to tell you to stay positive and keep your head up. But I know it’s something you’re going to think about, because I did and I’ve seen the reality of that situation play out in so many people I know.

There is no easy solution, so what I say to you is discuss it; talk about your fears, worries, wonderings… talk to your consultant, to any support workers you might have, to a charity – you’re not going to be the first person to wonder and you won’t be the last either. The important thing to know is that you’re not on your own; there are people you can chat to about it if you don’t feel like you can with your family. I only have a little practical advice on this because it totally differs from person to person, but try writing down your concerns or talking to a fellow cancer patient that’s been through it. Believe me, they would have also had those thoughts.

One of the best things I ever did (this may sound slightly crazy and really depressing, but it really wasn’t) was… a weight lifted I think, it put my mind at ease about the what ifs. It was to write down everything I would want at my funeral if I didn’t make it. I did this with a close friend who I’d met during treatment, she did the same. We’d talked a lot about the what ifs and what might be next, and decided to discuss what we might want. I’m blessed that I never had to hand that to my family, I never had to let anyone else but her see it. She did… but in a weird way, losing her was made easier for me knowing that everything she’d talked about wanting, everything we shared… she got to have that. She got to be remembered exactly how she wanted. So if you are struggling with the what ifs and don’t want to worry your family or friends, try writing down what you want. You might feel better knowing you’ve thought about it just in case.

Please remember it’s a hundred percent ok to be scared, to be terrified. Let yourself have those moments or they’ll build up. What you’re going through is scary but you’re not alone.

Which brings me onto my next point…

You’ll feel like you’re the only one:

Whether you meet people on the ward, at a support group or on the internet, there is going to be a time during your journey when you’ll feel totally alone. Although everyone seems to hear about  childhood and young adult cancer, it’s actually not that common. It’s strange once you’re thrown into that world… after a while it feels so normal, but even now when new people find out I have experienced it they’re surprised, they have no idea about that world. You will have to face that, you’ll have to deal with your friends probably not having any idea what you’re going through, with them not understanding its impact and how much that journey will change you. You might not realise it at first but it will change you. You’ll grow up fast, you’ll have to face and think about decisions you may not have ever considered before… you’ll have to work out what your priorities are right now and you’ll find that you probably won’t go back to being the person you were before cancer. It’s ok to grieve for that person, the one that didn’t have to worry, who didn’t know what it was like to be stuck in a hospital room while their friends were out at the cinema.

It can be a hard change – you might hate it, but there are communities out there, little pockets of survivors, of other patients that will get it. They’ll know exactly what you’re going through without you saying a word.

Everyone’s journey is unique, but we all know what it’s like; the things you didn’t think would change but do. The friends may drop away at times because they can’t cope, or you might have to miss out on education for a year and feel left behind… it’s those things that no one tells you are going to change. Those are things that long term, once you try to get back into normal life, will be the ones you notice, and going into remission isn’t always the end of your journey. I realised that recently. You may have long-term impacts from your treatment; that’s all part of your journey too, and it’s something that can be hard for people to understand, so it can make you feel even more alone.

You see, you grow up fast but in a lot of ways you’re also held back from progressing like your peers. You can get through that. Make connections, find out if your hospital has a group you can attend to meet other young people with cancer. Reach out online; there are lots of us who blog or look for Facebook groups and national charities that create opportunities for you to meet others. Only do this when you feel ready – some patients don’t want to meet anyone else and want to carry on as normal; in my experience they do end up reaching out in the end, but it’s all about your preference. Just remember the support is out there, don’t be afraid to reach out for it; you might just find the very people you need.

You may have to deal with losing those people you meet:

You might meet people who are treated alongside you; you might reach out and you might have to deal with losing those people. Survivor’s guilt is a thing, and losing the people you meet and connect with is never easy. There’s isn’t a good way to deal with that. So why, you wonder, would you even bother reaching out?

The thing about us young people who have been through cancer, or are going through it… we’re a bit like a family. We connect on a level that you probably won’t find in many other situations. If you lose a friend, please try to remember all those things about having them there that made your journey easier; you were those things for them too, you made their journey easier just by being there, by being a friend and there’s no reason you can’t make the most out of every single day for the both of you. Being exposed to this situation as a teenager or young adult puts life in a very different perspective and that’s ok; your friend would want you to be happy, to do whatever it is you’ve always dreamed of and you don’t have to feel guilty for doing so. They would be right there next to you, supporting your dreams.

A different perspective can be an amazing thing

Yes, there are the downsides I’ve discussed and you might feel like you no longer see things the same way as the people around you. That’s good; it’d be boring if we were all the same… and you can use that as motivation; you can use your own experience to push yourself forward. A lot of people I know have had bucket lists, things they’ve wanted to do but never got the chance and are determined to. This kind of list can work in a lot of situations; during treatment, for those who are terminal and after treatment for survivors. I’ve seen it work for so many of my friends and it gives you a sense of accomplishment.

I have my own list, only two people have ever seen it because I don’t want to share it with anyone else just yet. I want to achieve those things on my own; I started my list while I was on treatment and have added to it over the years. They don’t have to be outlandish goals. It can be, dream as big as you want to but don’t feel any pressure; each item has to mean something to you… I’ll tell you some of the things I’ve ticked off mine:

  • Going to prom (this was one of the first things on my list when I created it during my treatment)
  • Seeing my sister go to her prom
  • Gain some A-Levels
  • Swim in a waterfall
  • Abseil
  • Visit 3 countries in a year (thanks to my cousin for the help with this one!)
  • Go on holiday alone
  • Go to a beach party (this was so much fun!)
  • Support someone else through their treatment or long term journey (I’ve been lucky enough to do this more than once)
  • Work a full-time job for at least a year
  • Find a way to improve the way cancer is handled for young people in the future
  • Go to University (started this September!)

You see, not all of those are big dreams; some were a little trickier for me. Full-time work seemed a million miles away at one point, and abseiling… well, that was always going to be a will I, won’t I moment but it was worth it. There are things I’m yet to tick off but have plans to, and things that I know I’ll get to one day. The point is, it’s a motivation. It’s all of the things that my eyes were opened to that I probably never would have thought about if I hadn’t had cancer; and the things that for other people seem so obvious, were big for me. Going to Prom when the year before I had no idea what my future held – that was important. It’s also an amazing way of looking back and seeing what you’ve accomplished. It just gives you that extra little thought on how special life is, and you won’t want to waste a second of it.

I just want to add a message to anyone reading this that may have been told there’s nothing more that can be done. I don’t know what that’s like, I’ve supported friends through it and I’ve seen the different ways they dealt with it. Please know that you’re not losing your battle. Cancer hasn’t won, you win every single day just by smiling, by interacting with your friends and family, by being yourself. Maybe cancer can change and shorten people’s futures, but it could never take away the person we are, the strength it takes to face that… and the lives you’ve touched. My best friend and the first person I lost to cancer used the saying: “It’s ok to cry but it’s even better to smile.” So smile and know that you’re loved, and when you don’t feel like you have any strength left, know that there is a community of us right there with you.

Lastly: you can do this. Whatever your diagnosis, whatever the consultant says about your future… you can do it, you can deal with it and come to terms with whatever you’re told. You won’t feel strong enough at times; you’ll want to scream, cry and hit something – that’s ok. Do it if it helps, then take a deep breath and find a way to channel those emotions, whether it’s talking, writing, drawing, reading, just immersing yourself in movies; do what you need to and never stop being proud of yourself for simply getting through the day.

Love from

Fay

xo

February 4th is #WorldCancerDay. Here at Youth Cancer Europe, we continue to fight harder than ever to ensure that the voices of young cancer patients and survivors are heard across the continent, empowering them to become a key part of how cancer treatment and after-care is shaped in their own territories, and ensuring that the best possible, quality treatment is accessible to all regardless of where they come from.

We spoke to Martynas and Aurimas from Lithuania’s Junior Doctors’ Association about the need for young cancer patients and survivors to be part of the discussion that shapes medical care for current and future generations. Watch their interview here