Before introducing myself, I’d like to point out that this blog is partially bilingual, meaning I write most posts in English, but some are Swedish-only. I’ve integrated Google Translate for your convenience however. Mobile users have to scroll down to the bottom to switch language. PC-users will find this option to the right. For the front page, you can click on the images below to switch language as well. For more information, or if you’re experiencing difficulties with the language not switching properly, look here for support.
Welcome to my blog about life after childhood cancer – by Erik Sturesson
My name is Erik Sturesson, I was born in Sweden, Uppsala in 1988 and am today an adult child cancer survivor, activist, patient advocate, and a blogger both here and at Youth Cancer Europe to spread knowledge about what happens after the (initial) treatment is over and done. I’ve travelled to Lithuania, Romania and the Czech Republic, with more to come, exchanging ideas and experiences, in order to achieve my goal, and the collective goal of YCE and many other organisations: spread the facts about life with cancer and life after it, to improve the care we receive from the healthcare systems all over Europe.
My treatment led to multiple chronic conditions (MCC) I’ll have to live with for the remainder of my life. This is a fate that I share with 25-30 % of all child cancer survivors. I started blogging in February 2017 on Blogger, but I quickly moved to a self-hosted WordPress-site.
On top of blogging I’m a participant of the Maxa Livet-project, funded and operated by the Swedish Childhood Cancer Foundation. They are a great help for child cancer patients, and now adult child cancer survivors. Through the CHCF I was also asked if I wanted to go to Lithuania for a European-wide organisation called the YCE – Youth Cancer Europe.
I had never met other survivors before august 2017; I thought I was basically alone in having these issues for 14 years. Why would I think differently? All I saw regarding child cancer was upbeat and positive – they all seemed happy and healthy. I asked for help after my treatment and during, but it never worked out. No therapist understood my situation. Essentially, all of them said I should be happy to be alive, and that the side effects weren’t from the cancer/treatment. And, even if it was, I should be happy to be alive. Consequently, I never got over my treatment psychologically. This became glaringly obvious when I get a very severe depression in February 2017. This is when I started to blog about my life, and got involved with activism. During this process, I realized how common my issues were, and also how common the struggle to get the cancer diagnosis was. This ignorance is obvious in my earlier posts – keep this in mind when reading them. But as I said above, how could I have known? I was surrounded by doctors, including an adult oncologist, and no one told me. I was always a “special case”.
I went from being athletic and high performing, to suffer from chronic fatigue, combined with sudden episodes of extreme fatigue, of unknown cause and origin. There is a diagnosis called ME/CFS, or chronic fatigue syndrome. Some of my doctors suggested that it’s likely that. However, it’s apparently a contested diagnosis, and as such, my doctors simply state that I have chronic fatigue. It’s not an illness or disease; it’s a symptom. It’s an overwhelming and unnatural feeling of fatigue, powerlessness. At its worst, I feel like a prisoner in my own body. Exercise, diet, a good circadian rhythm all help, but the fatigue is still there. I was constantly tired, sleeping till 4PM and still being tired. I got a new antidepressant, and I got better. After several years, I got so far that I started going to the gym three days a week, biked 15-20km per day, studied at 50 %. Then, I had an episode of extreme fatigue. Maybe, maybe, if I knew I had fatigue, I could have adapted my exercise, but honestly, I don’t think it would have helped. I couldn’t study faster than 50 %, and when I got home, I was too tired to move, even if I didn’t go to the gym that specific day. My fatigue was present still.
Surprising Statistics, Distorted Attitudes, Decadence of Swedish Healthcare
These facts, that 25-30% of all childhood cancer survivors become severely chronically ill due to chemotherapy came as a shock to me. I learned this in 2017, 14 years after getting my diagnosis in 2003 – during a serious depression. The fact that I found this out in the middle of a severe depression was very likely the main reason that I started to blog. I wanted to tell everyone about my experiences, about these statistics, the poor treatment us survivors have been offered, once the cancer is gone. I wanted to do this, because few people know, want to know, or care about these statistics. Those who know or listens and believe you, say almost exclusively that, “But the cancer is gone, that’s really the most important thing.” In other words, “You should be happy to even be alive”.
Apart from starting this blog, I also contacted a local newspaper, UNT. We scheduled an interview. During this interview, she seemed unable or unwilling to understand or accept that all my illnesses were a consequence of the treatment for my cancer. She cancelled this scheduled interview abruptly, by faking an email from her boss. This is my suspicion at least. She said they that they had an “urgent journalistic mission.” So… I hope they didn’t forget to turn the sirens on! I understood that the interview and article was over before she did, though. This was not the first time I told my story, and not the first time I encountered this level of ignorance. This “journalist” knew she was going to interview a child cancer survivor, and she did in fact apparently, according to her boss, have a degree in journalism. This is how deep the ignorance and the warped perceptions of childhood cancer and us survivors are. Once again though, the CHCF are trying to fill this void and also educate the masses.
After being interviewed by the “journalist” from UNT, I got in touch with real journalists, on Sveriges Radio (Swedish Radio) instead. Sveriges Radio, Upplands Radio P4 (local) and Sveriges Radio P1 (nationwide) did a few broadcasts about what my life was/is like after the chemotherapy treatment, about my own struggles, the substandard healthcare we have been offered thus far. I was never interviewed live though; the interview was taped. On the local radio stations, the focus was on me; my story. On national radio, the focus was instead more directed towards the survivors’ issues in general and less about my personal problems and experiences. In other words, it seemed like things were going well. Unfortunately, it ended right there – no newspaper or news on TV appeared to be interested in spreading these unknown and downright crazy statistics. My hope was that the non-existent care we (didn’t?) receive would be criticized. Instead, this was brushed aside by the journalist who interviewed me for the radio. “It’s so new that they haven’t had enough time to offer better care. Besides, the doctor does mention the fact that child cancer survivors’ healthcare has been bad, and still is.” Time wasn’t the issue, though, and simply mentioning it in passing isn’t enough…
Stuck on square one for ten years
Child oncologists have requested new clinics with physicians from wide spectrum of specializations, not just oncologists. Ideally, we’d have psychologists, psychiatrists, neuropsychiatrists, and more. As it stands now, all they have is an oncologist for adults, and a nurse. That’s it – it’s taken ten years to even start gathering statistics to date, in 2017. Child oncologists have fought to have these clinics implemented for more than ten years, yet there’s nothing. This is shameful for Sweden. We’re a mere 25% of all survivors, as such we do not seem count. For those who thinks I should be grateful that I’m even alive, I want to say this. I am, most of the time, I think, though I’m not sure. Either way, there is a difference between living and merely being alive.
For the last ten to twelve years I have taken 12 +/- 2 different medications, between 20-40 tablets a day. I have several diagnoses and traumas from the chemotherapy treatment that affect me to this day. Right now, I barely leave my apartment because I’m too tired. I need to plan my day according to my energy levels. If I overexert myself, I won’t feel well. Going away for a weekend can take a week or two to recover from, as it is now. My cancer deprived me of my youth, my life, my potential.
My hope with this blog is to show the public that the care child cancer survivors received and are receiving have been outrageously subpar, or rather non-existent. My hope is also to educate the public regarding adverse drug reactions. Nausea, hair loss, fatigue and bad appetite are nothing –not when compared to actually serious side effects, anyway… In my case, the worst side effect I experienced was during the chemotherapy. I got a life-threatening, acute pancreatitis.
I thought I was in essentially alone in having had a tough treatment, that almost no one ended up chronically ill after their treatment. The treatment broke me, physically and mentally. I could bench 80kg consistently before I got sick; these days, if I go away for a weekend, I’ll be tired for a week, or more.
I’ve developed a lot since I started blogging eight, ten months ago; I have learned a lot. My intent with this blog was to share my knowledge and share my experiences as a child cancer patient and survivor; to write about my life after child cancer.
Erik Sturesson, Uppsala, 30.
https://www.facebook.com/erik.sturesson.5 (Chat is open for those who’s got questions.)