Robin, from Sweden, was diagnosed at the very early age of 9. In this interview, he tells us about his cancer journey, his experience with his doctors and how that shaped the person he is today. Robin is an active collaborator of the charity Ågrenska. He regularly visits hospitals where he talks to childhood cancer patients about his own experience, in addition to organising two charity golf tournaments of his own. Find out more about Robin’s journey in this video
Huge congratulations to our winners! We look forward to welcoming our survivors Magdalena (Poland), Jarly (UK), Bojan (Macedonia), Andrea (Spain) and Radu (Romania) and their guests to Cluj-Napoca this August for UNTOLD Festival! Thanks again to the promoters, and if you weren’t lucky this time keep an eye out for future opportunities. More to come soon!
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.
We’ve teamed up with the amazing Untold Festival in Cluj-Napoca, Romania, to once again invite a number of lucky survivors to this year’s festival, taking place 2nd-5th August. 2018’s spectacular line-up includes The Prodigy, Bonobo, Armin Van Buuren, Dimitri Vegas & Like Mike, Afrojack and many more!
We have 5 double passes to give away, scroll down for the terms and conditions and to enter the competition!
Terms and Conditions for YCE Untold Festival Competition
- The competition is open to former cancer patients associated with Youth Cancer Europe and any of its network members who are aged 18 years or over, except employees of Youth Cancer Europe and their affiliated companies, their families or agencies or anyone professionally connected with the promotion. The Promoter reserves the right to verify the eligibility of entrants.
- To enter, email email@example.com using the subject line “Untold Festival Competition”, telling us why you would like to attend Untold Festival 2018.
- The Promoter reserves the right to decline any entries that are defamatory or in breach of any applicable legislation or regulations.
- Out of all email entries, 5 winners will be drawn and given a pair of tickets each to attend this year’s Untold Festival in Cluj-Napoca, Romania.
- Closing date for entries is 23:59 CET on 15th March 2018. Any entries received after the closing date will not be accepted.
- The winner will be notified by email after 23:59 CEST on 15th March 2018. Winners are required to provide their full names, passport/EU ID card details, date of birth, phone number and email addresses so that they can be contacted by Youth Cancer Europe regarding prize delivery/collection details, travel and accommodation arrangements and in the event of artist meet-and-greet to facilitate access.
- Youth Cancer Europe will be providing tickets to attend the festival. Where possible, Youth Cancer Europe will also provide travel and accommodation for the winners. If a winner is unable to attend, they must notify Youth Cancer Europe as soon as possible to allow their prize to be re-allocated.
- Judges decision is final and no correspondence will be entered into regarding the outcome of the Prize awarded.
- The prize is non-transferable and no cash alternative is available. The Promoter reserves the right to substitute the prize for one of equal or greater value.
- The Promoter reserves the right to terminate, amend or extend this promotion in the event of exceptional circumstances outside its control, which affect its ability to operate the promotion.
- The winners are required to send photos and short testimonials from their experience at Untold Festival and to allow these to be shared on Youth Cancer Europe’s social media channels and website.
- Where artist meet-and-greets are organised by Youth Cancer Europe, the winners agree to have their picture taken for use in press and for social media promotions by Youth Cancer Europe.
- Access to artists’ meet-and-greets are subject to availability and are not guaranteed by Youth Cancer Europe. Where winners are granted access, please note that the same cannot be guaranteed for their guests.
- In administrating this promotion the Promoter will not collect more of your personal information than absolutely necessary and will only use your personal information for the purposes of this promotion.
- The rules of this competition shall be governed by and construed in accordance with the laws of Romania and shall have exclusive jurisdiction in relation to any disputes arising therefrom.
Youth Cancer Europe Foundation
5x pairs of tickets to attend Untold Festival 2018 (2nd – 5th August 2018) (one pair per winner to attend with a guest of their choice)
Access to artist meet-and-greets where possible and as facilitated by Untold and/or the artists directly
Travel and accommodation will only be supplied where possible and are not guaranteed
Cancer patient and YCE ambassador Kasia, from Poland, joined us at our latest annual meeting in Vilnius, Lithuania. In this interview, she tells us more about the issues around cancer treatment and lack of patient information in Poland, as well as the difficulties in accessing additional support from specialists in smaller towns away from the capital. Kasia is currently fundraising to pay for surgery in Germany as other therapies in her native Poland have so far not been successful. You can join Kasia’s fundraiser here http://rik.pl/katarzynawalinowicz/
Meet cancer survivors and YCE ambassadors Dusan and Milos. Both survivors of childhood cancer, in this video they discuss the lack of information available to young cancer patients in their native Serbia, as well as the stigma and misconceptions around cancer in society. Both Dusan and Milos represent the amazing Serbian childhood cancer organisation called MladiCe
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
- 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.
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
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!
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…
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.
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.
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
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.