YCE Archives | Youth Cancer Europe (YCE)

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

My name is Dragos-Cristian Finaru, I’m 30 years old and come from Bacau County which is in Romania. I was diagnosed with Hodgkin lymphoma and finished treatment when I was 20 years old.

What do you recall from your cancer treatment, can you share any thoughts and feelings, even fears you had at the time? and what helped you during treatment?

First of all, I remember that I did not know what cancer meant – Not at all! All I knew was that if you’re diagnosed like this, with cancer, you have no chance of surviving. Perhaps this was one of the reasons why my parents did not tell me the diagnosis when they found out.

The first thing that I remember is that I had swollen lymph nodes in my neck. This started to make my colleagues look at me strangely, avoid me and distance themselves from me.

My body did not react very well to treatment, but it was something that had to be done. My veins burned, my hair fell off and my skin began to decay, sadly girls started to keep their distance. I was asked on the basketball field if I had AIDS and if I will die, and during the classes at university they asked me if I was not ashamed to stay on the same bench next to them.

However, I believe this experience opened my eyes in many ways.

In the oncology section, I remember my father standing beside my bed, praying and crying. I realized that the decisions I make are not only, “It’s my life and I’m doing what I want with it.” Everything that happens to me will also influence the lives of those around me, be they family or friends, or maybe only the people I will help in the future. I need to be more careful with my choices. If I will wear a seat belt, if I did not drink that extra glass of alcohol, if I will wear safety glasses,  if ………

Of course, this was not the case here, but it is not about the examples, it is about what we do with our lives has a direct impact on others. And it’s a shame that we often only realise this when dramatic events take place.

You also realize that cancer can take away many of the things you care about, it can take the basketball ball from your hands, your free time, your hair!  But there is one thing it cannot take away from you, it cannot take away the love of others for you.

There is that feeling when you hear the diagnosis for the first time, and you realise that it is true, it’s not a prank or a mistake, I really do have cancer! I asked myself, “Why me?” From all the people on the planet, why me? The strange thing is, I asked myself the same question when I received the news that the treatment was successful and I survived! I couldn’t help but ask again, “why me?”

I strongly believe that we should all ask ourselves this question more often, no matter who we are, a father, a sales person or a patient. Why should I be a role-model-father, why should I reach and overcome my obstacles, why should I be the one who walks out the oncology ward. We should try everything within our power to achieve being the best we can and to overcome the things that hold us back. 

Otherwise, we will just complain about fate, no matter the context, the job or the situation.

What are you doing now with your life?

I studied biochemistry and psychology, and now I’m working at a learning and development company in Romania. I’m involved in all the projects and initiatives for learning and education I can find, from TEDx to the The Duke of Edinburgh’s International Award program, projects involving young orphans to sick people and people from disadvantaged backgrounds.

You are involved in many youth incentives, can you share a little about this?

I believe that education is a silver bullet. Education is everything. Education as humans based on experiences made inside and outside the classroom, not only involving “grades”. Because the challenges we face as humans are more complex than ever. And now more than ever we need people to be willing to help and face the new challenges addressing this generation. Young people are the future, “the day after tomorrow” and they should be our most important strategic objective. Or, at least, this is my perspective, don’t know if I could do or be involved in something else 😊

How long have you been involved in the Duke of Edinburgh Award, and what do you do for the Award program?

I have been involved in the Duke of Edinburgh Award program in Romania since 2014, I started by becoming a leader and overseeing young people doing the Award program within my community. Later I became an International trainer and I train people to become leaders, mainly school teachers on how to provide the program to young people, later I became a Unit Coordinator, and also a Supervisor and Assessor of the Adventurous journey aspect of the Award Program. I fell in love with the program – you could say “it was love at first sight”

Any special stories you would like to share about your Duke of Edinburgh award program experience?

There are many stories. Watching the sunrise from a mountaintop, or to understand how important it is  to say “I’m proud of you” to a young person can be, and how such a word could shape his or her life.

An interesting story took place last year during the training journey of team doing the gold award from the Duke of Edinburgh Award program. We were in a very arid and isolated area within the Dobrogea Mountains in Romania. We were just doing a final check with the team before starting our journey. We asked a person who just happened to be in the same area as us to take a picture of our team. He was an elderly person who only spoke English. I asked him where he was from and what he was doing for a living. He told me he came from the UK and was a geography teacher.

I asked him if he knew about the Duke of Edinburgh award program, at that moment he started to smile and told us how he was a supervisor within the award program 20 years ago. I told him there was a gold team in front of him, he started to get emotional and tear-up. He started to ask the young people the same things we were checking with them, making sure they had all the information before setting out on the adventurous journey.

The young people doing the award were so impressed that the same values and principles of the Award program are global. 

Young people doing the adventurous journey, part of the Duke of Edinburgh Award program.

Do you think the Duke of Edinburgh Award program can be used as a tool to help young people who are trying to get back to the routine of life after a cancer a treatment and why?

I don’t think, I know for sure – yes! The Duke of Edinburgh Award program would be a powerful tool to help youth survivors to start hoping and planning getting back to life. You are faced with so many doubts about the future, not-knowing how the treatment will end and what options will be available to you at the end.

The Award program provides direction, activities of personal growth and development, giving and receiving care and attention, experiencing progress and achieving goals, meeting new people and discovering new opportunities. It’s the perfect program to help someone get back on the track of life! 

Thank you for taking the time to be interviewed, would you like to add anything else? 

Above all, I want to thank Youth Cancer Europe for your time, effort and intentions, all your energy and all your good will. By being one of those who need it, I understand and feel the impact of your work.

You are the living proof of the title “We are the people we’ve been waiting for”. Indeed, we are. It depends on us to realize and to accept it.

 

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.

Patients and patient advocates are increasingly involved in decision-making in healthcare and the setting of research agenda. Knowing how to access scientific literature, correctly analyse and interpret data, hold a scientific argument and to effectively and correctly communicate scientific content have therefore become essential advocacy skills.

Ana Amariutei, 22, is a cancer survivor and patient advocate and studies Biomedical Science in year 3 at the University of Sheffield. She is also a member of YCE and participated at the 13-15 October ESMO Workshop “Science for Advocates” in Munich.

“I am really happy I had the opportunity to participate at the science workshop organised by the European Society for Medical Oncology.

During the workshop we were provided with a lot of useful information about ways in which scientific literature can be accessed, interpreted and communicated accurately. The lectures and group work allowed us to understand better how data is interpreted, we had presentations that described basic statistical concepts and we had exercises during which we read and analysed scientific papers using the ESMO-MCBS (Magnitude of Clinical Benefit Scale).

The workshop was a successful event and it surely provided us with a lot of useful and detailed information.” said Ana. “We look forward to put into practice what we learned during this weekend.”

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.