Little People Association Archives - Youth Cancer Europe (YCE)

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

“The impact of cancer does not stop when treatment does or once the disease is no longer deemed active. For many young cancer survivors, support is needed for them to reintegrate back into academic or working life. In many countries longitudinal support for patients is poor and “joined up” follow-up care is often a pipe dream.”

Check out the September 5, 2017 article by Nick Smallwood in The BMJ (formerly the British Medical Journal), an international peer reviewed medical journal, written about the Vilnius YCE meeting, titled Young cancer patients advocate for improved care here: http://blogs.bmj.com/bmj/2017/09/05/nick-smallwood-young-cancer-patients-advocate-for-improved-and-equitable-care

You can also read the article in PDF format here in case the above link doesn’t work.

“We’ve seen through the enthusiastic faces in the room, through the outcomes that we managed to achieve in 8 hours with no structure but with everyone bringing up similar topics, sharing the similar visions that there are so many things that we can do jointly.”

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

“I believe meetings like this are important because it helps us get together with survivors from other countries and we can find out what issues other people face and what would be the solution on a European level.”

Floin Barnea – Romania

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

“I think it’s very helpful to bring people together from across Europe to try and discuss the issues they are facing with cancer despite the differences we face in funding and medical care. And I think this really has helped and we have something we can hopefully build on.”

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

“Being in different groups through the meeting, I managed to talk with almost all the participants from the conference and this way we were able to see the problems that are around the whole of Europe Recommended Site. ”

Ana Amariutei – Romania

  • 12th grade student at Emil Racovita National College, Iasi
  • Patient support Volunteer with Little People Romania at the Sf. Maria Children’s
  • Emergency Hospital, Iasi
  • Cancer survivor

“I liked the fact that it was an open space summit and we had freedom to speak, freedom to what meeting we wanted. We could also raise our own issues and it was a very good way to get people together.”

Floin Barnea – Romania

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

“Probably the most intriguing thing about this meeting was that it was an open summit, I never joined or participated in that king of meetings ever, so that was pretty impressive.”

Tomaz Dezelak – Slovenia

  • History and Theology Student at the University of Ljubljana
  • Author, The Other Me
  • Cancer survivor

“All the ideas were flowing, everybody was talking, everybody was discussing their own problems and their own issues and everybody was giving an opinion so it was a very productive day.”

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

“I was very impressed by the level of knowledge and the ability to communicate it in a second language to most people. I couldn’t have done that in a foreign language, so I was very much blown away by that. But also the enthusiasm and the engagement everyone had throughout the day, despite the fact we all had very little sleep and too little coffee.”

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

“My first reaction was not knowing what exactly was going to happen, I was a little bit afraid of the themes that were going to come up, what everybody is going to talk about, if they were really going to answer to my questions, what I was asking myself about, and I was pretty impressed to see that many people had the same questions as I had. Same themes came up that I was interested in and I was pretty impressed, I really liked it and I think it was really worthwhile coming.”

Francisco Mateos – Spain

  • Cofounder and board member of AAA – Asocoacion Espanola de Adolescentes y
  • Adultos jovenes con cancer
  • Volunteer Coordinator
  • Bachelor in Philosophy and student of Pedagogy
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

George Seremetakis – Greece

  • Double major graduate in Computer Science and Football Coaching
  • Vice-President of Kyttaro, Greek Organization of Adult Cancer Survivors
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

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

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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

205 young people who have completed their cancer treatment will participate on December 12th at the First National Seminar on Long-Term Effects of Cancer Treatment in Young Cancer Survivors organized by the Little People Association Romania in Cluj-Napoca.

The event, a first of its kind in Romania, will take place from 09.00 – 11.00 at the Grand Hotel Napoca, Cluj-Napoca, in the Forum Hall, on December 12th. The seminar addresses young people who have gone through the cancer treatment experience in their childhood or adolescence. Specialists in pediatric oncology confirmed their presence at this event, where they will be answering questions from the young cancer survivors.

“Tumors may disappear, but according to a survey from the Little People Association with young cancer survivors aged 17-31 as respondents, almost 20% of them suffer from chronic pain, have trouble learning and concentrating, while nearly 60% complain of emotional and mental exhaustion, and some of them even depression. Young people don’t have adequate information available to them on how to access social benefits, 19% of them aged over 18 are not working and not studying, 16% report discrimination at work or school. While data from all over the EU clearly shows that this group is at a high risk of developing long-term effects of cancer treatment or secondary cancers, there is no standardized long-term tracking and caring system for young survivors. Many of them go for regular checkups at the pediatrician, but most of them are lost in the whole medical process for young patients. “said Katie Rizvi, founder of the Little People Romania.

The attendees are registered members of the Temerarii Club – the Romanian Community of Young Cancer Survivors® founded by the Little People Association Romania in 2006.

The young survivors will also be delighted to participate for the eighth consecutive year at the Temerarii Christmas Gala. The theme of this year’s edition is Ice Ball. They will celebrate their victory over cancer, in Cluj-Napoca, the city where this community, the largest of its kind in Europe, was founded.

The Ice Ball – Temerarii Christmas Gala – will take place on December 12th, 2015 in the Grand Hotel Napoca, Cluj-Napoca, starting at 19:30. Media representatives are invited to raise a glass of champagne in honor of the young cancer survivors’ victory, at the event’s reception.

What Temerarii means today is more than 400 young people aged 14-30 years from over 123 localities in Romania who, from the moment they won the fight against cancer, have become true heroes, writing and rewriting daily a success story, being a true inspiration for those who now wage the same battle.

The Temerarii community is the founder of Youth Cancer Europe network – a European communication and initiative platform for the young people diagnosed with cancer, developed in 2014, with partners from 15 European countries.

Originally published 11th Dec 2015 via http://galasocietatiicivile.ro/stiri/sanatate/premiera-in-romania-seminar-national-despre-efectele-pe-termen-lung-ale-tratamentului-oncologic-la-tinerii-supravietuitori-de-cancer-15748.html

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