Positivity, cancer, late side effects and healthcare systems

Back home from YCE

I am home again, having visited YCE’s conference as a representative for Barncancerfonden, or the “Swedish Childhood Cancer Foundation” for YCE’s Open Space Summit and General Assembly, 2017. I miss it already, it was lovely. I will write more about this, as there is so much to write about. Before reflecting further, I need to get certain things off my chest.

This is only the second time I have visited other survivors as an adult. Everyone was very positive, whereas I was not. I cannot reconcile these emotions when interacting with members from the YCE, who come from nations where there are no medical systems that works without an insurance, and perhaps even then. Nevertheless, my feelings are there.

I started to type in English (it was on lifeafterchildcancer.com then), I changed to Swedish, now I am back at English… Does this mean I will change back to typing in English permanently – again? Switching a URL is easy; letting Google know you changed it is less so. Let’s just sit back and see what happens, as the events unfold.

Positivity and depression

So, positivity and emotions. As it stands now, for me, it’s really about my depression and fatigue. It is crazy to hear certain stories of how the system works in some nations- How maltreated some have been. Then, my issue becomes as detail. Yet, it is a detail that have costed me, a lot. Ten years I lived in ignorance, seeking help, to no avail. Yet, living in another nation, with no proper healthcare, maybe I would not be alive. It can always get worse, the limiting factor being death. It can always get better. Still, it does not help with the depression. I want to write more about the disparity between wealthy nations living in opulence, and less wealthy ones that do not. Most attendees appeared to be very positive, whereas I am not in a stage where I can feel this way. I wish to explain why – both to my old followers and new friends at YCE, for those who reads this.

I will explain my situation as best as I can. It Is difficult to summarize 150 000 words written, in one post that is 1800 or so. Before I begin. Maybe I am not alone in feeling this way in YCE. I want to state a few things before I start. This is not where it ends for me. I have not given up. If I had, I would not have travelled to meet the wonderful people from the YCE – and others. I would not have committed myself to the organization in the small way I did. I am fighting a battle within myself, between my depression, fatigue and anxiety, and then who I really am, what I want to be.  Anyway…

Something had to change

I got a call from Lina, the project manager for the Swedish Childhood Cancer Foundation’s new project, meant to help now-adult child cancer survivors, two weeks before the. This project is called “Maxa Livet”. She called me and said there is a conference in two weeks in Lithuania, and asked me if I wanted to go. I said yes, and 20 minutes later I was on the bus, to get my passport. She gave me the weekend to consider, but I already had the passport. I was going. Prior to this, I only left my apartment for doctors’ appointments or similar. I did go to Stockholm a maybe a week before, for group therapy, but still, this was new. I have been tired since January this year, and although I could push through on the YCE, it hit me hard. I imagine I am not the only one in this regard.

Maxa Livet is an amazing project. Without it, I would have missed the YCE-meeting. When I missed my flight, I almost fell apart, I thought, if I cannot even make it in time for the flight, what can I do? I felt pathetic. I felt honoured when I was asked to go to Lithuania to Youth Cancer Europe. I had spoken on the phone with Lina quite a bit, regarding the issues we are facing in Sweden, as well as my own issues.  She figured that this whole thing, it would be perfect for me. And it was. I cannot describe with words how much this meant. She is an amazing person.

Prior to this, I had met other survivors just twice, at Barretstown, immediately following the end of my treatment, twelve years ago. Then again, a few weeks before this meeting.

It was fun for a while after Barretstown, I felt better. Then the reality of my chronic fatigue caught up with me. I have had my ups and downs ever since, but for every three steps I take forward, I take one or two backwards. I moved in with my grandmother one summer, to see if it would improve my health. It did not work.

Negativity does not sell

My blogposts are often very negative, at times dreary and, glooming. There is a reason for this. I told this story to many at YCE, but I will repeat it for my followers, and my friends at YCE. Many have had journeys rougher than mine, I realize this. Nevertheless, my emotions are there. Maybe someone will be able to identify with what I am writing.

I had non-Hodgkin’s Lymphoma, specifically a lymphoblastic lymphoma, T-cell, stage 3-4. I got the diagnosis November 2nd, 2003 (might have been the 3rd), I turned 16 January 14th, 2004 The oncologists told me, “It’s not so bad, the treatment is just for two years.” “It’s even less”, they said, because “the tablets have very minor impact.” They did not have a very little impact on me. After several months of literally sleeping 20 hours a day, they realized that someone had obviously replaced my blood with water, to feed the vampires. As if I wouldn’t notice. I am not sure how they did it, maybe in a similar fashion as in Breaking Bad? (That is sarcasm, no one diluted my blood. I am not crazy, my invisible friend Moggie have assured me, many, many times of this.) All I know is that some of the samples were catastrophically low. I got a transfusion, they lowered the dosage on tablet Methotrexate by either 1/3rd or 2/3rds , I cannot remember at this point. After this, my health improved, ever so slightly.

Nevertheless, my issues were still there. I was not tired, I was fatigued. It took till 2007 to locate one of the most common reasons that makes a patient tired – I had hypothyroidism. They also realized I had diabetes. In 2009, I got new antidepressants, Mirtazapine. It didn’t take long before I got much of my energy back. I started to exercise; I had gained 30kg since I got cancer. I lost about 0.5kg per month. I do not regret doing this slowly, I did not want a “relapse”. By 2011, I’d lost enough weight that I needed help from a dietician. I lost one kilogram per week with her help. I went to physical rehabilitation, but I got better rapidly, so I went to a local gym in 2012.

Then, one summer, my testosterone levels dropped, and I crashed. I was hyperactive but also exhausted. I could not focus on difficult tasks. Instead, I did remedial things, such as helping my mother organizing her papers. She had boxes full of receipts, ten years old, fifteen years old. Ancient papers with no meaning.

Having a combination of hyperactivity but also exhaustion, as well as an inability to focus are polar opposites. It felt like it tore me apart; appeasing both the hyperactivity and the exhaustion was not possible. You want to run but are too tired to walk. I got several different medications for this, one being Quetiapine. I gained ten kilograms in a couple of weeks, so I stopped taking them. I took some anti-anxiety medications as well. Of course, my general physician had to do all of this herself. I had two options: emergency, psychiatric care, or my GP. I had to wait three months to get help.

By then, it was already over. My testosterone levels went back to normal, I started biking to school again, and going to the gym. As this was happening, I felt normal, almost. I studied part time, 50 %. I still lived at home, I never really helped with cooking or anything. After a day in school, I was knocked out. I did not even have the energy to play videogames.

Sadly, these constant and sudden incidences of fatigue have plagued me throughout my life since the cancer. It is hard, I believe, for outsiders to understand this. This is made worse by the fact that I tend to not look like I am tired. This is part of the ignorance I am fighting against in Sweden This is why I loved YCE, or one reason I should say, and also the Swedish’ organization, where this not questioned.

There is also a secondary reason for my issues, which is a traumatic childhood experience as a boy. I won’t go into any detail, but it made me a control freak. Being forced to continue with chemotherapy, then getting ill like this, it was not a good combination.

Ten years

I went to the same oncologist for ten years. I met doctors from so many different disciplines I cannot even count how many. Suddenly, my oncologist told me, after she had been screening me for ten years, that I need rehabilitation. At first, it was a brain damage, then it was ME/CFS. I asked my oncologist, “Why look into this now, why not 10 years ago when you started treating me?” Her response was simply that it was not a part of her job before 2016. That is when the guidelines, which had been in existence since 2007, was actually applied.

I went to YCE; everyone is kind and understanding. However, I felt like a failure again. Ten years has passed, and I have come nowhere, done nothing. Living at home, a trip like this one means a week of recovery-time. No energy to cook, not even to clean my room at times. I am happy the days I can find the focus and energy to play games.

I struggled through high school due to the fatigue, for ten years, and all they did was flip a switch to start getting me help. Add to this the disastrous depression with suicidal thoughts that I got at the beginning of this year, and this catastrophe was inevitable. I had the choice to end my life, or fight back. I said to myself, “Fuck it, I’ll go all-in”, I was convinced I would not survive another severe depression like that. Although I can seem cheerful some days, I am still struggling with my depression. I take three different antidepressants, one of which is giving me a lot of side effects, which I need to stop taking it, slowly. One of them is used for my epilepsy as well.

Now, with the YCE, it is no longer I, it’s we. YCE facilitates an opportunity to help us change what we perceive as inadequate. There are more pressing matters than Sweden’s issues. I managed to reach the national radio with the help from friends, hoping more newspapers- and stations would look into this, by the public, unknown issue. They did not, it stopped right in its track. There were no reverberations from other media. I have yet to meet a nurse or physician that knows about late side effects. I asked a curator for the adult oncology clinic if she knew anything about what I told her. She said no.

Being too tired to go out at night for events is frustrating as well. I have to start bringing board games 🙂

Essentially, struggling against a depression, fighting a system that, in my case, failed me, doing this alone, finding out I have been kept in the dark for ten years. Having been in the dark for so long, it’s difficult to see the light.

It is not over yet though.



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