Erik Sturesson 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.

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