youth cancer Archives - Youth Cancer Europe (YCE)

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

Erik Sturesson is a wonderful young man from Sweden. An active member of the YCE community, Erik runs a personal blog page in which he discusses, amongst other things, his journey through cancer and late effects, including his battle with depression. Romanian childhood cancer charity Little People invited Erik to attend their recent Christmas Gala in Bucharest as part of his involvement with YCE; he wrote a blog post about his experience which you can read below. Erik’s personal blog about cancer offers an open, honest and deeply personal account of his experiences. The below piece has been edited down, however a full version of this blog can be found in Erik’s own personal blog  https://www.livetefterbarncancer.se

Invitation

My adventure began with an invite through Facebook, sent by Emi, an employee, and an exceptionally compassionate and driven person at Little People, a Romanian foundation for children afflicted by cancer. The invite was for the Little People’s annual Christmas gala. The gala was planned for the 16th of December (2017), but we arrived to Romania on the 15th and left the 18th. I was very lucky, as this year was extra special – it was their ten-year anniversary.

Unlike most attendees, I wasn’t from Romania – I’m from Sweden. And, I was invited primarily due to my involvement with the YCE and not The Little People foundation, but I’ll get to that later. Either way, the invitation card was beautiful; I’m collecting all these things from various events. I can have them as a reminder where I’ve been, what I’ve done. I can look at it when I feel depressed, or to remind me that I’m not alone.

Anyway, I was truly humbled, honoured and shocked by the invitation. Suffice to say that I was excited to go! And off I went, at 3:30 (AM), as my plane departed at 06:00!

The Little People, treatment and healthcare

The Little People is an organisation in Romania, started by Katie and Shajjad Rizvi. They work at hospitals with children, in order to make their treatment easier. Due to Romania not having a well-developed healthcare system, the environment in which children are treated is very rough to say the least; kids having to share rooms with five, six other children. Lack of medication, staff, funding and so on. The Little People alleviates some of the issues, but I feel, after hearing certain things about the system, that Romania needs to acknowledge the issues and work to improve the care provided. The Little People can’t do everything, non-profit organisations aren’t supposed to provide basic, rudimentary and crucial treatments. They’re supposed to provide the silver lining in these kids lives, not save their lives!

Romania

As I pointed out to a few people at this event, I wasn’t a great guest of Romania. I was shocked about the traffic in Bucharest, it was chaotic to say the least. I got into a cab. It did have a seat belt, but no way to buckle it up. They had huge roads but sometimes no lines indicating which lane is which. I did get home alive though.

However I loved the people. I spoke with the person sitting next to me on the flight over. He liked fishing; he had several pictures of some of his catches. Suddenly, the man in the row in front of us actually started to speak with me/us as well. He probably overheard I was from Sweden as he told me that he worked in Denmark, but he visited his native country, Romania, twice a year. We spoke “through” the seats, him bending his neck for 30 minutes or so. He was very kind and helpful; we had a very fulfilling conversation. Due to a snafu with the MAAS-service, he was also kind enough to help me find my way to the luggage area.

Anyway, everyone was very kind and polite, and the people is what I’ll remember and cherish most from this visit. Together with the…

Activities

There were several activities planned from the 15th and 18th  December, 2017 – apart from the gala on the 16th.

On day one, we went to a spa, which turned out to be my favourite activity. It was the visit to the Therme Spa. We went on the 15th, got there at 6 or 7 PM. It was amazing.

They had two huge pools with integrated jacuzzis, and the pools were really warm – as I entered the water I even said that it feels like I’m melting. All stress from traveling just floated away.

Youth Cancer Europe

I was invited to this gala mainly because I’m an active, contributing member of Youth Cancer Europe, YCE. I joined because their intent is to give youth cancer survivors a voice. A voice through which I felt that I, and all of our members, could let the public know that we exist. Educate them about our various issues, such as lack of treatment/medical expertise in treating cancer in some nations, and lack of follow-up care in essentially every nation in the EU.

I feel (and hope) that YCE will be the megaphone needed to get people’s attention; to penetrate the cloud of ignorance and taboo surrounding cancer in modern societies – including western EU-members, like Sweden. During this weekend, we made some real progress; it was the meeting we needed to get this very blog started. It hasn’t been easy, but we’ve done it! Please, if any survivors are reading this, contact us and let us help tell your story. You’re not alone.

Best part of all meetings with other survivors

To me, merely being around other survivors is a great experience. Frankly, the part I like most is once everything’s done, and a small party remains, just chatting. I could do an entire weekend just playing board games, card games, watch a movie, play some video games. Simply hanging around.

Even when I went to the amusement park the weekend before, it was the talk I had with another participant after going there, that was the highlight of the weekend.

Still, I did get a sightseeing tour together with a volunteer, Delia, from The Little People foundation. We had lunch/dinner. I ordered a steak on a plank. They actually had it, although it’s a Swedish dish primarily. I didn’t realise this when I ordered it. People were staring at me intently throughout this meal. I’m not sure if it was the plank, or because I spoke so openly to Delia about my health issues. I let Delia know they were staring, but I didn’t really care.

The gala

Of course, the main event (for most) was the gala. It was awesome, I dressed up real nice for the first time in three years. They had sorted a red carpet, we could have our pictures taken by a professional photographer on it. Everything inside the dining hall was equally fancy, with posh menus, some sort of lollipop. It was like a cake in the form of a lollipop, the ladies at my table explained.

Unfortunately, I couldn’t stay for very long at this event. I have issues with fatigue and sadly, 350 people in the same room would be bad enough for me. There was a band playing as well though, which made it impossible for me to stay. I truly didn’t mind though, I saw it as a learning experience. I had earplugs, but they were too effective. I needed them to block out ambient noise, but it blocked everything else as well. I tried to not push them in as far as I did at first, but it didn’t look very nice having them stick out the ears like that.

“I’m still learning how to deal with these things, in this case, fatigue. For ten years, I just tried to become normal. I tried so hard that I got stuck in survival mode, and forgot to live. As such, even though I don’t always succeed, I’m at least trying to do something constructive, to adapt to my limits, my reality.”

Straight after the event

I’ve been depressed for a year. I haven’t had enough energy to do anything. I wasn’t exercising at all. After this gala, this visit to Romania, however, this changed. My trip to Romania is what flipped the scale.

I’m now back on my mountain bike, starting at 15 minutes per day. Some might not see this as an accomplishment, but it is when you’re in a situation such as mine. Just like it’s an accomplishment to go to the toilet on your own after a major surgery. Or even get out of the bed and taking two steps.

Being able to exercise is vitally important as it’s the best way to deal with fatigue and depression, if done carefully. I’m not going to get well just like that, it’ll take time.

However, I feel that I can say that I’m back! Soon, it’ll be 20 minutes of biking, 30, 60. I’m back.

Summary

Not everything went perfectly on the trip, I did miss much of the gala. However, by next time, I’ll have found a solution.

As I wrote previously, the best part was meeting both new people, but also some who I knew from the YCE-summit that took place a few months prior to this gala. Merely being invited was exciting for me. I’m so glad that I got to meet everyone and see Bucharest, even if it was a small part of it.

For its flaws, it did have beauty. If you’d look up, even in what I was told was the crummy parts of Bucharest, you’d see beautiful architecture. They had a very nice, small chapel close-by the hotel. Once outside of Bucharest, or in another part of it, the roads were decorated with Christmas lights, which was wonderful. There was some sort of structure, something similar to the Arc de Triomphe, in a roundabout. Not sure of its story, but it was there and it looked nice.

There was beauty, even in the places I was told there was none. I can’t wait to see when I return and can see what the Romanians would say is beautiful about their nation. I’m sure it’ll be even more amazing!

You can read Erik’s personal blog, with posts in both English and Swedish, here 

https://www.livetefterbarncancer.se

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

Hailing from Israel, Guy was diagnosed with Hodgkin’s lymphoma at a young age. Cancer free for 9 years, he was recently elected to represent Youth Cancer Europe as part of its board. In this interview, Guy talks about the importance of an organisation such as YCE to help improve the quality of treatment and after care for young adults affected by cancer across the continent.

A fresh new patient-led study was published on the 5th of October 2017 in Frontiers in Pharmacology (IF4.4), the most cited open-access journal of its kind. The Overview on Patient Centricity in Cancer Care (S. Narbutas et al.) reviews 20 clinical cancer guidelines and showcases the results of patient organisations surveyed in eighteen countries on four continents.

Our verdict is clear: patients’ preferences and values are not properly captured in health technology assessment (HTA) and in clinical guidelines.

– Sarunas Narbutas, YCE Co-Founder

The study explains:

Patient experience, emotional support and convenience of care were relatively neglected fields in the reviewed guidelines. Patient engagement was rarely presented in the guideline development phase.” and goes on to say “Even if patient-centricity is a leading paradigm in cancer policy, based on our research it is not yet standard practice to include patients or patient organisations at all appropriate levels of decision-making processes that are related to their health and well-being. Patient engagement should be an integral part of cancer care decision-making.”  

View the full article here: https://www.frontiersin.org/articles/10.3389/fphar.2017.00698/full or click here to download a PDF version.

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“I am very confident that young people can contribute on a professional level, speak with the same voice that health politicians want to hear and speak with the same competence and dignity [of] that [of] the health professionals, but in doing so there remains their own personal touch with the disease. One example [is] me living with cancer for eight years now and taking pills every day, I see that through young patients’ voice you can make a big change. It should not be localized or nationalized, it is the time for it to go global. Let’s start from something and Youth Cancer Europe is a very a timely initiative that I believe will tackle a lot of imminent needs and I believe it will attract a lot of support.”

Sarunas Narbutas – Lithuania

  • Advisor to the President of the Republic of Lithuania,
  • Lecturer on EU and International Law at Vilnius University,
  • PhD Candidate (Networked Governance),
  • President of the Lithuanian Cancer Patient Society,
  • Cancer survivor

“[Institutions] like medical and pharma are in need of an organization that connect all of the other NGOs all around Europe, not only Western Europe but also Eastern Europe, and not only NGOs but also connect patients with clinical trials, with other doctors from other countries and connect doctors between them. And I think that what I see as being done is exactly what [is needed] on the European level right now.”

Emanuel Schipor – Romania

  • Student at the Faculty of Psychology and Educational Sciences, Cluj-Napoca
  • Patient Support Volunteer
  • Assistant to Little People hospital psychologist, Institute of Oncology in Cluj-Napoca
  • Cancer survivor

“Not only do we need to empower survivors to look after themselves better, but we also need their help. As a medical research community we need the survivors to tell us what are the important questions that we need to be doing research on in the future.”

Kathy Pritchard-Jones, MBCh, Ph.d.MD – United Kingdom

  • Professor of Paediatric Oncology University College London
  • Institute of Child Health
  • Steering Committee member of ENCCA (European Network Cancer research in Children and Adolescents)

“I think survivors also should be able to express their voice and be part of the decision making process.”

Florin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“I think that the idea is very much welcome and I hope that we will be able to collaborate together and go for it strategically”

Dr. Riccardo Haupt, MD – Italy

  • Head of Epidemiology and Biostatistics Hematology and Olcology Institute Giannina Gaslini Genova, Italy
  • Founding member of PanCare

“I think that anything that gets young people with this experience to connect and share experiences and learn from each other is a good thing.”

Lars Hjorth, M.D lose belly fat fast. Ph.D. – Denmark

  • Consultant Paediatric Oncology and Hematology Department of Paediatrics, Skane University Hospital
  • Chairperson PanCare
  • Coordinator PanCareSurfUp

“It’s extremely important that all adults who went through cancer when they were young, get together, share, explain, help the new ones and help us.”

Gilles Vassal M.D. Ph.D. – France

  • Professor of Oncology in University Paris-Sud
  • Head of Clinical Research at Gustave Roussy Institute
  • President of SIOPE (European Society of Pediatric Oncolgy)
  • Founder of ENCCA (European Network Cancer research in Children and Adolescents) and ITTC

“I definitely think that a united voice is much stronger and at the very least it shows that young people are not facing these issues alone”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“Here it does not matter who you are, it matters what you’ve been through, and it matters that you are willing to share and that you stand on equal grounds with the rest of the participants. So yes, I definitely believe that Youth Cancer Europe is the perfect forum for young people with cancer to develop their full potential.”

Karina Kopriva – Romania

  • Political Science Graduate, BBU, Cluj-Napoca
  • Consultant on external affairs, Little People Romania and Republic of Moldova

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The young cancer survivors often suffer from depression and have a hard time finding their place in society. The first study made in Romania on the needs of the people in this category reflects this situation. Over 200 young people participated in Cluj-Napoca at the first national seminar on long-term effects of cancer.

The attention and fertility issues or the fear of relapse were some of the topics discussed at the meeting of cancer survivors and medical specialists.

Emanuel Schip, survivor: “It is good to know what’s going to happen next, so you can prepare yourself.

Theodore Urziceanu, survivor: “The experiences of those who went through something like this could prove to be very useful.

The young people who attended also helped by participating in a study whereby the specialists could better understand the profile and needs of someone who survived cancer.

Katie Rizvi, founder of the Little People Romania: “It is a study that has never been done before. The most important thing the young people are concerned about is their fertility and the possibility of having children after cancer treatment.

The results also show that 20 percent of those who defeated the disease still suffer from chronic pain and experience difficulties in learning, while nearly 60 percent experience emotional difficulties and some of them even depression. 19 percent of those aged over 18 do not work and do not study and 16 percent face discrimination in the workplace.

Rodica Cosnarovici, Head of Pediatric Oncology Department in the Cluj Oncology Institute: “I think the most common problems that they face are psychological and reintegration problems“.

The doctors suggested that the Ministry of Health could also come to their aid, by developing a national pediatric oncology program at a national level.

Gheorghe Popa, pediatric oncologist: “Financing oncology programs for adults does not fully meet the children’s needs, as child cancer patients have special needs.

 

Originally published on 12th Dec 2015 via http://www.digi24.ro/Stiri/Digi24/Lejer/Sanatate/Supravietuitorii+cancerului+isi+cauta+locul+in+societate

About 150 young cancer survivors from 10 European countries, including Romania, wore, Sunday evening at the Untold Festival from Cluj-Napoca, yellow shirts with a message against this illness, making a statement that there is life and hope after cancer.

The 150 young people arrived on Sunday at around 19.00 at the Cluj Arena in Cluj-Napoca, wearing yellow shirts with the message “Fuck Cancer” printed on them, planning to attend the performances taking place on the last evening of the Untold Festival, especially the one from David Guetta, Mediafax reported.

Katie Rizvi, founder of the Little People Association, told the journalists that the young people came to Cluj-Napoca to attend [a gathering with members of the Youth Cancer Europe community] and the Annual Summer Meeting for Young Cancer Survivors from Romania.

“From the 2nd to the 6th of August, the Little People Association will bring together in Cluj-Napoca 150 young cancer survivors from Romania and nine other European countries, including Poland, Slovenia, Belgium, Hungary and the Republic of Moldova, for the Annual Summer Meeting for Young Cancer Survivors from Romania, where the Youth Cancer Europe Advocacy Masterclass will also be held. The message on the shirts may seem controversial, but we don’t mean to offend anyone by it. At the same time, we are talking about young people who, when looking back at their lives and all the suffering they went through and yet trying to see it all in a positive light, that they are fighters in a battle with this terrible and cruel illness, sometimes would end up saying: “Fuck cancer” and they should be allowed to express themselves this way. They lost a few years fighting cancer, they went through chemotherapy and radiotherapy, and now they can say that they’re doing well, that there is life and hope after cancer, and that this disease can be defeated, “said Rizvi.

She also stated that the Masterclass is a training session specifically dedicated to young survivors of this disease being an important step for them in becoming ambassadors of all cancer survivors and in conveying an alternate message, a positive one.

“The young people will learn how to spread their message so that it reaches the general public and how to have the courage to share their experiences” said Rizvi.

Daniel Tomai, aged 22, is one of the participants at this event. When he was only 8 years old, he was diagnosed with acute lymphoblastic leukemia.

“I underwent one year of intensive therapy, chemotherapy, radiotherapy, and the disease went into remission. Now I am cured. It’s a terrible disease, and the hospitalization period was pretty rough, but I had a lot of self- confidence. When those around you hear that you have cancer, they already call the priests for the last rites. But our message is one of survival, that you can get over cancer and that your life can go on,” said Tomai, who is currently a student in the fourth year at the University of Medicine in Timisoara.

Oana Rusu, representative of the of the Little People Association in Cluj-Napoca, said that young cancer survivors should have an important contribution in presenting different disease cases, learning to develop their representation and networking skills, as well as their lobbying practices.

The young people attending the meeting are over 18 and they are survivors of various forms of child cancer, such as leukemia, melanoma and cerebral cancer.

Youth Cancer Europe is a European network with partners from 15 European countries, founded by the Little People Association. Some of the network’s priorities are the provision of age-appropriate and accessible treatments in Europe, long-term care and political and legal representation of young cancer patients.

The Annual Summer Meeting for Young Cancer Survivors from Romania will also host the General Assembly of the Temerarii Club, which was founded by the Little People Association in 2006. This club is a community of Romanian teenagers who beat cancer, with almost 400 members. The Temerarii Club became the largest active group of mutual support among adolescents and young adults affected by cancer, as well as one of the most active communities of its kind in Europe.

The Annual Summer Meeting of Young Cancer Survivors from Romania will take place as part of the project Cluj-Napoca 2015 – European Youth Capital.

Photo source: Untold Festival

Orignally published 3rd August 2015 via http://www.wall-street.ro/articol/Social/187092/untold-cluj-mesaj-impotriva-cancerului-lansat-de-tineri-supravie-uitori-ai-bolii.html