This post was translated to English from Swedish by my brother, Johan Sturesson.
Two days after the health weekend
I never thought it could happen in Sweden. I should have seen it though; all the cutdowns in healthcare. Instead, I ignored it. Now, here I am. All my caregivers agree that I need rehab for the problems that occurred during the chemotherapy treatment. My oncologist, however, called me and said that she had now contacted all units she could have, for me to get rehab. Each and every one refused. I do not get any rehab. I’ve really fallen between the cracks this time. If someone at the county or hospital doesn’t change something at a high level, I will not get a rehab, plain and simple.
My neurologist, pain relief specialist, oncologist, my general practitioner – everyone has said the same thing: I need rehab. However, I have no approved diagnosis, so I do not get it.
I’m essentially fighting a two-front war as it stands now – I know it sounds hyperbolic, but it isn’t. Let me lay out my case for you and you can decide afterwards if you feel that I’m hyperbolic
Before moving on, I want to summarize, briefly, what happened after my treatment, how my life changed. I’ll also summarize what has happened in the past year, partly for new readers, but also because it is necessary to convey my feelings and my message. Faithful readers will probably recognize large parts, but there may be details that I have not mentioned before that are crucial. I will also mention a phone call I received from my oncologist two days after the health weekend, which is a strong contributory reason for writing this post. This post is a revised version of what I sent to Young Cancer via email for their campaign “Cancerbaksmällan” that they mentioned in Aftonbladet. I also mention my own initiatives, such as the blog, to tell you what I’ve done in the past ten months. A lot has happened. Two separate doctors have said that I need to get used to my new life within the past three or so months. For the first time since I completed my treatment twelve years ago. That my current life is what I’ll have. What I fought blindly for, to get a normal life, was impossible. No one said anything to me about it, though.
In recent months – activism from my bed
I have blogged (duh :)) – to start blogging was the best decision I made since I got sick. I do not get tens of thousands of readers, so every reader means a lot. The blog has given me an arena to spread my opinions and ideas in a format that suits me, and it gave me something to do when I was most depressed. To survive the depression that I suffered from the last 10 months, I had a self-made, strict routine. This routine was built around the blog. I needed something of value to do, and that thing was the blog. The depression forced me down on my knees, but at the same time I’ve risen, slowly, but surely. I am more focused on fighting for change than I have ever been for the last 14 years.
I also tried to reach out to traditional media at the same time, something that was difficult. Those who have been following this blog, you know what happened when I first contacted the local news. The reporter didn’t accept that I got all side effects from the chemo, she was rude and asked irrelevant questions. She faked an email, I suspect, from her boss. Ironically, now that a large Swedish charity is involved, they’re writing about it. UNT, Uppsala Nya Tidning wouldn’t know a good story if it’s right in front of their face – literally. Finally, I got in touch with Sweden’s Radio P4 Uppland (link) several months ago. It became a small feature that was also sent a few days later in P1. The doctor in the P1 interview said that the care we receive is not adequate and that it is boring and I thought, “At last, that fact that we didn’t get the care we needed and why we didn’t get it comes to light.” But no … It ended, right there and then – I contacted the journalist who did the interview. He said that the phenomenon of these side effects is so new that they did not know any better. I linked an article from 2007 where SALUB says in Dagens Medicin (link) that they want special late side effect receptions with specialists from several fields attached to them. Ten years so it’s not so new that they didn’t know better … Additionally, the journalist continued, the doctor had already said that the care does not work in the interview, so they have recognized that problem. Yeah, right. “Sorry, we didn’t take the issues seriously, that’s why your lives are ruined. Sorry.” The journalist thought it was sufficient. He’s wrong.
In addition to this, the problem has been known even further back in time than that. In the UK, the first clinics for follow-up of cancer patients were opened in the mid-1990s. All this was in vain, as he saw no value in continuing. I was and am grateful that it was mentioned on P4/P1, but once again the truth was kept hidden away. “I thought I was alone”, that’s what I said, which was also mentioned. This was alarmingly misunderstood, and my corrections was ignored. I meant I was used to the crappy care I have been receiving since I got sick. This was due to me thinking I was a special case, that I was alone in having these problems. Then I realized I was not alone. There were not many explanations as to why the care did not work. The reason behind this was that we were not prioritized, something that is true even today. (Some counties have better follow-up than others, I originate from Uppsala County and UAS is my healthcare provider.
No information, before or after
I was diagnosed on the second or third of November 2003 (non-Hodgkin’s lymphoma, T-cell, lymphoblastic lymphoma). I then received intravenous/intrathecal/intramuscular chemotherapy for one year, which was a true nightmare. Then I was treated for another year with pills. The treatment was completed in 2006, and it had crushed me in a billion different parts.
I still remember a conversation I had with one of the oncologists at the beginning of treatment. I thought that a two-year treatment was so long, so the pediatric examiner said that the pill treatment barely counts, because it’s not so hard, so it really only is one year… I had several side effects in the first year, one worse than the other. The crescendo was a life-threatening pancreatitis that posed, and still poses quite a big problem even today. The first months of tablet treatment I slept 20+ hours a day, mom called the hospital several times and pointed this out. I finally got in and then they noticed that my blood values crashed. They lowered the dose of cytostatic by 30%, if I remember correctly and gave me a blood transfusion. I slept 16 hours a day for several years, even after the pill treatment.
I was diagnosed with secondary diabetes and a shortage of thyroid hormone in 2007. I became somewhat more excited after this, but I was still unable to celebrate Christmas Eve with my family when I fell asleep before 4:00 pm in the winter. I was always tired. In 2009, I received contact with Young Adult Psychiatry in Uppsala for people under 25 years of age, after a friend had died in cancer. I received new antidepressant drugs when I suspected that I had a depression and the old medications did not help. Suddenly, I became much nicer, within months I started going on longer walks, four kilometers, an hour a day. Most likely, I had been tired because of depression for several years …
I started exercising, and after many years (about 2009 to 2012) of tiredness, I began to approach the weight I had before treatment (63-65 kg) around 2012. I had periods where I was feeling worse, but it never became truly horrible. I then started training in the gym after going to a physical therapist. I studied at half-time, trained three times a week, and used a bike as a means of transportation.
After losing 30-35 kg I crashed
Then I became dead tired early 2013, I think it was. I suddenly became very depressed, suffering panic attacks, was without energy but still hyperactive. I received a large amount of sedative medication and tested other strong drugs (eg Quetiapine) that are otherwise used on those who have psychoses and other more serious problems than my depression. There were interviewed psychiatric consultants who suggested this, as well as the psychiatric session at UAS. I had to stop taking these though, since I gained up ten kilos in two weeks. Before I knew what it was that made me feel so bad, since my GP found nothing wrong, I had to meet a “psychologist”. He made it clear from the beginning that he did not question that my problems were physical. He said the type: “Riiiiiiiiiiiiiight, I do not question you there. But, what do you think it is? “I replied that I did not know so you could keep on looking. It’s not my damn job. Then it lasted for 30-40 minutes. He repeated that he definitely did not question me when I said it was physical – but always followed up, “What do you think it is?” I wish today I asked that idiot to go to hell after five minutes as I usually when I meet morons like him, instead of sitting there for so long.
However, I was lucky, my GP at that time was truly great (as is my current one). She found what was wrong. It turned out to be a testosterone deficiency – I was right again that there was something physically wrong. I got an appointment for the endocrinological department relatively fast, but I felt so bad that the time I had to wait was torture. It would take even longer before I could start the testosterone treatment. Of course, a referral to psychiatry was written under all this – I had time for them when I felt better again after four months. Feels good to know that they are there when they are needed … This was during the summer, 2013, or 2014.
I returned to study half-time and work out, and had some good years. 2015 came next crash, this time for unknown reason. I first suspected testosterone deficiency, but all tests looked good, so this time it was not physical. I started to get extremely tired, I had to stop training, then I had to stop cycling to school, finally I had to quit off school completely. I had chronic fatigue since my treatment, but I did not call it fatigue then, just tiredness. However, as I mentioned earlier, I have had such episodes of extreme fatigue quite frequently and regularly
Fatigue, extreme fatigue – the captive in my own body
This is extremely difficult to handle; I suddenly wasn’t even able to go outside the door unless absolutely necessary. At the same time, I’m used to moving around. I became a prisoner in my own body, and this makes me feel panicked. I go from being active to almost paralyzed. I got medicines and antidepressants. When this occurred in 2015, the situation began to stabilize after half a year, I felt much better later in 2016. I was still tired, but not worried / depressed as I have been before.
I stood on a calming medicine though, such a type I do not want to name. I told my GP that I wanted to de-escalate that medicine, but it was not a major deal. Not until after the summer, towards the end of the year 2016. The problem was just that when I took my last tablet, I had no more doctor’s days for my doctor. This was an old doctor, he should know better. This was a depot version of a substance that counts as one of the most (legal) addictive drugs in Sweden. These medicines should be handled by one and the same doctor, and when de-escalation occurs, care must be taken. When I took the last tablet, when needed the most support, I did not get anything, at all – I was alone. I first had very mild withdrawal symptoms; I had taken the medicine for so long that it was inevitable, something I expected would happen. This was in November 2016.
Then, in December, the panic attacks came back ten times worse than before. I thought it was normal, but it got worse and worse. The closest time to my own GP was three weeks in the future. In the end, I had to go to the doctor immediately; I had gone down several kilograms in a week when I could not eat but at the same time surrendered myself. I got started with the medicine I finished – again, around New Year. It was too late then – my anxiety disappeared, but it went to a depression in combination with panic attacks instead of within a week.
The last few months – the depression
I should have switched a GP from right there, I had no confidence in him anymore. I just finished this medicine, I had gone through hell just to get back where I started. Now, however, I needed, in addition to the other medicine, new antidepressant medications as well. I could not accept this from him, who left me hanging before, which contributed greatly to things escalating to where it ended. Instead, I used more of the drugs against the panic attacks. I was already enrolled in psychiatry since 2015, when I received this episode of fatigue that caused the need for the soothing medication I tried to end in November 2016. It was because I had an appointment at a psychiatrist after the worst was over – again. I did not even know that I was still enrolled in psychiatry. If I had not been, I’d have to wait three months to get there again.
My then general practitioner then did everything to get rid of me. The dose of the sedative drug was high, he sent me to several psychiatric receptions and every single one was a dud. The idiot sent me to the emergency room for psychiatrics and thought I would get help there. I explained to him that they only take in extremely urgent cases there, at best, and that I would not get any help there, but he insisted. The last psychiatric reception my GP sent me to would help me, he assumed. But they did not and the GP was now on vacation. Again. I asked for an emergency time for another GP, which I received. I was lucky, I got a phenomenally good GP. Suddenly life became more stable, and it went in the right direction – it turned over a weekend. Or rather, she made me stop and slowly change course, instead of continuing towards the brink of the destruction. We de-escalated the calming medicine without any problems, and increased the dose of the new antidepressant medicine. She became the doctor who supported me – if I had not received her as a doctor that day, I do not know if I could have survived this depression.
The depression has now lasted for ten months, and I’m far from being completely restored, but I feel much better. Right now, the side effects that this medicine has makes me feel tired, and sick.
Surviving treatment, the mental way
There are some other issues left though. One major problem is that I never got help getting over my cancer and illness. I was tired of having to explain and being questioned by psychologists and psychiatrists that the problems I had (fatigue, diabetes, and so forth) came from treatment. I was tired of those who did not say more than, “But that was the best option, even though the treatment was difficult”. A.K.a: “Be glad you live …” This mindset permeates our entire society, healthcare and the public today.
Current examples: I was interviewed by a journalist in a different context recently. I explained to her that I’ve had a very serious depression which I recently started recovering from. She then asked, “But you did not have suicidal thoughts?” I paused, and replied, “Well …yeah” Her confused response was, “But you’ve gone through so much, why …?”. This is so revealing how the public looks at us survivors – we have gone through so much and should be very happy that we even live. We will live every day as it was our last. By the way, it was close that the day I received my life-threatening pancreatitis would have become the last one, and I do not feel like experiencing it again.
At least I sought help in the beginning, on as many fronts as I could. However, I grew tired when no-one knew what they were talking about, and knew nothing about childhood cancer survivors or what problems we face. As such I have never been able to process my treatment, mentally or physically; I hid it away instead. Because of this, I find it hard to read about anything that has to do with cancer. The few times something was written about childhood cancer, the focus were the happy healthy kids or young people. Normal people, and as such none like myself.
The big betrayal – New facts were released like a bomb on me
I wasn’t dismissed from the adult oncology department. I do not know if I’ve been given a clean bill of health yet. I think so, as my oncologist said, “The cancer will not be back but we want to keep an eye on you for all side effects.” I also had other specialist doctors – so I thought I got all the help I needed and could get. I am accustomed to being a special case, being alone. I thought I was a part of the one percent who became so badly sick. Then it turned out that it was not correct.
About half a year ago, in the midst of my extremely serious depression, where I suffered from suicidal thoughts, I learned the truth. For the first time, I heard the term “late side effects” or “late effects” then, 2017. I was told that 25-30% gets terribly, chronically ill. I found out that the problems I suffered from, had been well-known and that SALUB put forward guidelines for the first time in 2007 for how survivors should be followed up. I found the article that showed that special clinics had been requested since 2007. I understood that I was completely fooled by my oncologist, pediatric orthologists and the failure of the rest of the care for twelve (or fourteen, depending on what you look at) years.
It took me twelve years to find this out. My oncologist could at least mention late side effects for me as a term. Perhaps pointed out that my goals, to be basically like I was before, albeit unable to work full time due to fatigue, was not realistic. I had repeatedly said that the reason I struggle was to return to normal life, even though I would not be able to work full time. I thought that my episodes of extreme fatigue would disappear. I asked why the oncologist never said anything about this before. She answered, “Det ingick inte i mina arbetsuppgifter”, or in English, “It wasn’t a part of my job description”. Suddenly, two doctors have briefly said that I must now get used to my “new life” and rehabilitate. I’ve been fighting for a total of twelve years for something that’s impossible. This has been released like a bomb on me. This is sadly not even the worst. I get no damn rehabilitation now either because I have no diagnosis. Desperately, my oncologist has tried to help me, trying to find a reception that is able to receive me. She sent me, in what I think was desperate, to the neurologist to see if I had any brain damage. I did not have that … This neurologist came from Greece, and his face said everything (and his mouth also added to that, luckily). Paraphrasing: “Umm, What? Why aren’t you getting rehab? You need help. I can’t lie, and write that you have a brain injury so that you get help, but you need help. Is that how it works in Sweden?”. He had not worked in Sweden for long, so he did not know the system, but he was shocked. He did not understand how the system could be so bad.
I talked to my oncologist last week and said she did not really know exactly which clinic I need help from, so I can’t contact them myself. It’s mainly about learning to handle my fatigue, something I do not even know if I want to do anymore. I have a depression that has gotten worse because I feel total hopelessness over the care I do not get, but should have, and need. Why should I continue to fight when I (and my GP) is the only one who does? If care is bad now, what about ten years? Obviously, I will fight now. They have awakened a sleeping giant. I’m not just laying down, even though I sometimes feel hopeless. In any case, we feel honestly like living in North Korea. It is not written about this in public media, even though we had a whole bloody gala on TV5 on October 2nd for childhood cancer patients. They will also become adults, they will also get some of the problems we are living with.
My oncologist, however, states despondently that no one wants to receive me.
It’s official: No rehab reception wants to receive me in Uppsala
It took me ten years to graduate through Komvux as I crashed over and over again. I was done for a couple of three months, around March-April 2017, before the doctors, and I, realized that I might need rehab. Now I’m here, I have the need, but the help is not available, all roads are exhausted. My oncologist says she is lobbying at Akademiska to get a neuropsychiatrist assigned to help us, but she does not get it. I asked what I could do myself. She replied that I could contact the county council.
I contacted Aftonbladet myself last week, too, but I received no response. Perhaps I should just be glad I survived and shut up. I also contacted psychiatry, but I need to change my psychiatrist. Every time I tell my illness / treatment he answers the same thing … “You know, that’s the best of the two options?” I told him it’s not him who decides, I’m an adult today, it’s my feelings, experiences and my life. He said one of the times that, “I think you’re hovering a little in the clouds when you say so.” Then I put him in his place properly. It did not help. Perhaps he believes he can use this as a reference for when I feel better. The problem is just that I always answered this way – what determines what I’m saying is how much energy I’m willing to waste to explain. I did not think I would meet him again so it was not worth it. As such, if he actually thought about it and not only forgot about it, then there’s nothing to compare to. Regardless, the answer I received from the psychiatry was that there is a long wait for new doctors … I contacted the only psychologist at Sävja VC that I did not judge, I’ll have to see what happens. I have to do something.
At the same time I try to avoid thinking about this, because I can’t think of it. My whole world has been turned upside down, in the midst of a serious depression, which could also have been avoided. Had my doctor or even a nurse just called me and check up on me when I finished that medicine just a year ago, they could say, “It’s not normal so you might have to start the medicine again.” Before it was allowed to progress to the point it did. I have reported this to IVO, but it does not make my depression less stressful. Ten months of my life, gone. It is also explained that I need rehab, but I can’t get any. At the same time, nobody is interested in hearing this, even Aftonbladet. I do not know if I can continue de-escalating my antidepressants, but I have to do it. I get so many quite heavy side effects from those, that I just can’t stand anymore. I can barely wear clothes since it gets too hot. I’m sitting at an open window, eight degrees outside, the skin gets cold but I do not notice it, I still feel hot. It’s one of the side effects …Right now I’ve extreme fatigue right now, but even the two good years I’ve had in the past 14 years were not as before the cancer. I was athletic and strong, today I am nothing. I also increased 30 kg because of this new antidepressant and my fatigue that led to inactivity. There was about as much as I gained during and after the treatment, which I lost of when I began to have slightly more energy after 2009.
After so many years, we deserve redress and recognition that care has been crap, not because of ignorance but because of low priority. It is, as Young Cancer writes, very different among the county councils. In Stockholm, they have a children’s clinic at their clinic, as well as in Lund. The one in Stockholm was not appreciated by one of the oldest cancer survivors. None of the many, many extremely serious problems she had was a late side effect. She was only baby when she was treated, the dose was too low and it had been so long that it could not be a late side effect, the doctor said. Nevertheless, research shows that the risk increases for late side effects, the longer the time goes by. In other words, they appear to be picking names out of a hat to decide who sitting in this department, perhaps like this, and the loser ended up at the late side effect reception. Then whoever ends up there can sit and be generally stupid and ignore all the facts. It is just one of the older survivors in Sweden, who works as USKA (assistant nurse) with a completely deformed body that does not receive part-time sick leave. That is the only problem with their incompetence in Stockholm, but who cares about a person over 50 who got cancer as a baby. And then worked despite all the problems she had … To Uppsala now. In Uppsala, we have exactly the same staff as before the change – an adult pathologist, and an oncologist. That’s it. There are thousands of things I have to come across now, not least that I have to accept my new life. Something I’m not even sure if I want to.
How two years can become 14 years, to become a lifetime …
I thought I could trust that I got the best care possible; I had a doctor for everything, not least the oncologist. All of a sudden, I just meant to get used to my current life and at the same time not get any help. I realize at the same time that I have been so focused, since the treatment, to become “normal” and I put all the focus on this. Now that it is impossible, it feels like I have thrown away all these years, at the same time, I know that the life expectancy of childhood cancer survivors is not high.
“You must be healthy to be sick.”
I wish I could focus on my struggle to get well, or healthier. Instead, I must fight the system – tiresome and unfortunate but inevitable. I have not survived this long, and have no plans on giving up now. I’m lucky in having a great GP, and I also met a new psychologist today, who’s great.