Fuck cancer Archives | Youth Cancer Europe (YCE)

Finding Out About Late Complications

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

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

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

Getting over my cancer treatment with group therapy

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

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

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

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

The revelation of learning about “late side effects”

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

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

I wasn’t just waiting around, doing nothing

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

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

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

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

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

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