Press Archives | Youth Cancer Europe (YCE)

Youth Cancer Europe’s Jaymz Goodman, from the UK, is the main subject of an article in The Sun that puts the mental health impact of cancer in the spotlight. Jaymz’s story is an insightful read that shows just why YCE continues to be strongly outspoken about the attention needed towards mental health care for young people living with cancer, as highlighted in our White Paper and as discussed at length at our recent “Chemo Brain: Cancer and Mental Health” webinar

Jaymz tells The Sun about the struggle he went through on his way back to normal life – battling PTSD while going back to work and trying to rediscover the joy of life that he felt was given to him as a second opportunity. As he puts it, “there is an unbelievable need for mental health support once you’re out of the cancer bubble”.

Soon the day to day grind became too much for Jaymz and he said his mum started to notice his mood had changed. “I wasn’t showering, wasn’t waking up at a normal time, wasn’t eating much. I was basically wallowing in self pity and trying to figure out what to do.” Jaymz said he was assigned a counsellor but the expert wasn’t a cancer specialist. He highlighted that he was lucky enough to receive private help through his mum’s insurance, but said that he knows not everyone is lucky enough to be able to access this and that even with private help it was hard for him to come to terms with how he felt.

Youth Cancer Europe was featured as one of the leading community voices calling for equal access to be made available to all.

Jaymz said more mental help and guidance should be given to youngsters who are dealing with cancer and is working with Youth Cancer Europe for equal access to quality treatment and follow-up care for young people living with cancer.

Jaymz finished treatment two years ago and in December he would have been in remission for five years. He added that once he was out of the “cancer bubble”, where you have consultants checking you over weekly, and found those tremendous waiting times for post treatment mental health care, he felt like he had “totally fallen out of the system”.

Jaymz added: “Much more needs to be done and I am just lucky that I was in a situation where I could access private mental health care.

“Many are not as lucky as I have been, and so many suffer much more as a result”, he added.

We are proud to continue helping to shed light on the mental health burden of cancer – both through Jaymz’s story and the voices of our wider community. A big thank you to The Sun for the opportunity to be featured in this article, which you can read in full here.

The British Medical Journal (BMJ) recently hosted a piece on our continued effort to support each other (and the wider community) through the lockdown, as well as the ideas that our creative minds are cooking up to tackle the funding issues that organisations such as ours are facing today.

You can read the original article here.

How a pan-European cancer patient organisation is tackling a funding shortage while helping the wider community 

The unprecedented impact of covid-19 on healthcare systems across the world has caused tremendous side effects. The impact has been felt not only on the immediate treatment of other diseases. Access to medicines and access to screening have been disrupted. The delivery of mental health services and psychosocial services has been disturbed, as well as much else. With the focus shifted towards coronavirus and the search for a vaccine, areas of healthcare not immediately related to the virus, as well as charities and patient organisations worldwide, have been heavily affected in the last three months by huge funding shortages that ultimately put new and future patients at increased risk.

With both these shortages and the threat of an economic recession looming, organisations across the world have had to be creative: launching new fundraising campaigns, reviewing operational expenses and providing new types of services to support their communities.

Youth Cancer Europe (YCE), is a patient group made up of several thousand young cancer survivors aged 18-39 from across Europe, with its members representing half a million young people affected by cancer from 31 different countries. As self-isolation is one of the key stages in the treatment of most cancer patients (when their immune system becomes compromised), we have a large community of experts who are no strangers to what is slowly becoming the so-called “new normal.”

Our recent activities include encouraging our community to create a series of online videos which provide “Top Tips From The Experts” to help people cope with the lockdown. The idea was spearheaded by one of our most active members, Bradley Gudger, a chronic myeloid leukemia survivor who is also a youth expert advisor for the UK’s NHS.

Staying connected with others, helped him, and he believes, helps others when they’re feeling alone and vulnerable. “It takes five seconds to pick up the phone and say how are you; but at the same time I don’t expect anyone to feel like they have to respond—simply sending a message already shows that you’re there for them if they need someone to talk to. If they don’t feel like talking back, that’s also fine too, but it’s important for people to know that they don’t have to do something if they don’t feel like it,” he says.

We shared the tips our young patient advocates provided across our social media presence, and they were accompanied by illustrations by Andrea Ruano, an Ewing sarcoma (rare type of bone cancer) survivor from Spain who works as a professional graphic designer and is a member of YCE’s communications team. The UK’s Metro newspaper ran a story on Andrea’s lockdown routine and her views on the value of diving back into an old passion or discovering a new hobby. In her case, it was embroidery which related to her own cancer diagnosis.

Emi Schipor is a 26-year-old testicular cancer survivor from Romania and a member of YCE’s steering committee. He dealt with the isolation of his cancer experience through gaming, becoming an active member of online gaming communities. He is now using that experience, along with the extra time currently spent at home during lockdown, to explore new ways to fundraise for Youth Cancer Europe through online gaming.

Emi began the process by gathering Romania’s biggest gaming influencers for a charity event hosted via Twitch (a popular live streaming platform with a heavy focus on video games) to raise funds for Asociatia Little People, a Romanian childhood cancer charity (of which Emi is also a member). Emi is now organising an eSports charity tournament for both eSports teams and solo players which will be focused on raising funds for Youth Cancer Europe.

While the spread of covid-19 has brought about huge and unexpected challenges from a healthcare perspective, this doesn’t make cancer (or any other disease) go away. And as long as cancer is here, so are we—to help shape European policy, collaborate in and promote research, fight for better access to care, better treatments, better conditions and to help fix the disparities that exist across the continent for young people fighting the disease, as well as looking at socio-economic aspects such as returning to school or work and healthy life years after cancer.

These new challenges also open up new possibilities, and we will continue to face these head on not only for our cancer community, but for the benefit of all.

Katie Rizvi, CEO, Youth Cancer Europe.

“Top Tips From The Experts”

Self-isolation is one of the key parts and stages of most cancer patients’ treatment, when their immune system becomes compromised. With most of the world now under sudden lockdown and forced to self-isolate, YCE’s own community of young cancer survivors has rallied together to share their own expert tips on how to best deal with self-isolation during this time, especially from a mental health perspective. 

Andrea Ruano is a 28-year-old cancer survivor born and raised in Salamanca, Spain, and currently living in Manchester, where she works as a professional graphic designer, illustrator and photographer as part of a marketing team. She was diagnosed in 2007 (aged 15) with Ewing sarcoma, a rare type of cancer that occurs in the bones. Since 2015, she has been an active patient advocate as a member of YCE, in which she’s also part of the communications team, contributing her talents to design and illustrate the organisation’s white paper which was launched in 2018 at the European Parliament in Brussels. 

Andrea has been illustrating YCE’s top expert tips for the organisation’s social media pages as part of her volunteer work, as well as sharing one of her own.

Her tip has much to do with the importance of setting the boundaries between work and down time while at home. She strongly encourages people to set time aside to dive back into an old passion or discover a new hobby to take up – a bit of time each day that they can dedicate to just themselves and doing something that they genuinely enjoy. To that end, she’s dived back into an art form which she picked up while studying Fine Arts at university: embroidery. But with an added twist.

Tying back to her own experience with cancer, Andrea has been making bones – a recurring theme that was also the subject of an experimental art project she put together some time ago. Embroidery, she says, forces her to focus on something that completely switches her off from her work routine. It’s an art form that relies solely on the use of her hands and takes her away from laptops, phones, emails, conference calls and anything that isn’t purely analog. She finds it hugely relaxing and says of it that “it forces you to be present and in the moment… otherwise you risk messing up your hands!”

Late last year, YCE returned to the European Parliament in Brussels to host a discussion on the subject of Cross Border Health, the second of five key topics included in YCE’s white paper. This was YCE’s second official event at the European Parliament, following 2018’s launch of the white paper with a special event focusing on financial discrimination against cancer survivors.

In the lead up to the event, one of our leading case studies from the event (that of Mariana Coutinho, who was also one of the main speakers on behalf of YCE at the European Parliament) helped generate wide mainstream coverage in Portugal, securing features and new stories in outlets with a combined reach of over 22,000 readers in print and 45 million unique users online.

In addition to our press coverage in Portugal, a number of key Romanian outlets also took notice of our event thanks to the participation of our co-host, Cristian-Silviu Busoi MEP.

Below you can check out the online coverage from the event.

Portugal

Romania

This blog piece by cancer survivor and YCE ambassador Fay Turner-Paxton appeared originally on Metro UK as part of International Childhood Cancer Day. You can see the original piece here or read it in full below.

I am more than a cancer survivor, but since being diagnosed with Hodgkins Lymphoma at 15, people can’t see past my medical history.

Before cancer, people treated me like a normal teenager. My mum had had cancer only a few years before, which had been hard, but I had a good group of friends that I made through dance and music groups.

But when I got my diagnosis all that changed. I was no longer just Fay, I was ‘the girl who has cancer.’

Even my cousin, who was a similar age, told me that she was repeatedly asked whether she was ‘the one whose cousin has cancer.’ I didn’t know it was happening at the time but it just shows how much cancer impacts more than just one person.

I understand that people mean well when they try and protect children with cancer, but being told I couldn’t do things because of my diagnosis made me feel less than.

I was determined to sit my GCSEs, even when a year out was suggested; although it was meant with good intentions, I always felt like the standards had changed.

Like I couldn’t want better grades or to make the most out of myself because I had cancer.

My voice felt very small, especially around adults who thought they knew what was best for me, without actually consulting me.

Fifteen-year-olds today are given so much independence, yet when illness strikes they are reduced back to being babies, barred from making their own decisions.

It for this reason that I have joined Youth Cancer Europe’s #removelabels campaign. People are more than their medical history.

I am lucky in that I never backed down in what I wanted, and although they had reservations at first, my family wanted me to push for more.

I wouldn’t have got my A levels or be at university now if I had accepted the label of ‘girl with cancer’ and what other people thought I should be doing.

It took leaving my school to do my A Levels in a different city for me to feel free of people’s expectations of me.

And I am so glad I did. Who knew being put in a box for years would actually stifle your ability to find out who you truly are?

My passions are volunteering and writing, and one day I hope to be an author or screen writer. And it is these things that I choose to lead with when I meet new people, especially now that I am in university.

My time at school taught me that it’s better to be quiet, and nowadays I stay relatively silent about my childhood cancer.

On the one occasion I told my university friends about it, after I missed lectures for a hospital appointment, they all sat silently. They had no idea what to say and I found myself reassuring them that it was fine! I hated that it made them see me in a different way.

As an adult, people seem to either have a lot of questions when they find out and then tell me how ‘inspiring’ I am, or they don’t think I can do things because of it (just like when I was younger.)

One relative even told me I shouldn’t quit my full time job to go to university because I was lucky to have found someone to hire me in the first place.

Luckily I have enough strength to laugh off these remarks (like the time someone told me to watch a film because a character in it had cancer) but I worry for the people that don’t.

Following our recent event at the European Parliament in Brussels to present our white paper and the “Right To Be Forgotten” for cancer survivors, YCE has been hitting the headlines across the globe.

Zooming in on the issue of financial discrimination, two of our survivors from the UK (Brad and Seren) were invited on BBC Two and BBC Radio 5 Live to talk about their experiences with travel insurance premiums, which BBC News compiled along with quotes from UK MPs.

Our event was also picked up by The Independent and the Daily Mirror newspaper, while insurance industry trade publications including Insurance Times and Insurance Edge collected the impressions of the ABI (Association of British Insurers) on the mater.

We also caught the attention of Politico, which featured our event in a preview piece within its healthcare newsletter, as well as picking up key highlights the following day.

Belgium’s Deputy Prime Minister Kris Peeters also weighed in on the issue in a press release via his own website (in Flemish – also available in French here), while other specialist publications that reported on our event included Hospital Hub, Youth Time Magazine and Travel Insurance Explained.

Swiss Re’s John Turner, who was one of the speakers at the event, wrote this piece for the Open Minds blog. Emma Andersson also wrote a Finnish-language piece for the blog Minä, syöpa ja työ (Me, cancer and work), which highlighted the participation of our co-host, Finnish MEP Sirpa Pietikäinen.

Two of our members have also written about the event in their own blog pages – Finland’s Emmi Leppänen (see here for her pre-event piece on Siskot); and Fay Turner-Paxton from the UK, who wrote about her experience as a contributor at the European Parliament here.

And this is only the start of it! We’re thrilled to see the momentum building up as we bring our cause to the front of the line for young people affected by cancer all over Europe. Stay tuned for more!

A special thank you goes out to our sponsors for helping make the event possible.

“It’s hard enough to beat cancer, but just because you’re in remission doesn’t mean your life is a cakewalk. There’s a level of anxiety that comes with surviving the disease that never really goes away. You’ve got to watch your diet and your health habits.You’re always on alert. Those powerful people deserve a break, especially the young survivors that still have their whole lives ahead of them.” – Kat Bein, Billboard Magazine

At this year’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 young cancer survivors from five different countries in meetings organised by Youth Cancer Europe, who specially flew the youngsters in for the occasion.

Our story attracted the attention of the world’s press, with an extensive article published in the homepage of none other than Billboard, the biggest music news website on the planet!

Check out the links below for some of the highlights:

“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.

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