Child cancer survivors being abandoned – those responsible should be ashamed of themselves.

Prelude

I’m not pointing my fingers at the doctors here, at least I hope I’m not – I had some of the oncologists when I was being treated who have spoken about this in the media, mostly media dedicated for those in the medical field, but sometimes in regular media as well. Naturally, they didn’t use as provocative words as I do. I know they didn’t want this for me – for us; I’m not alone in feeling this way. I have my criticism against these doctors as well, but that criticism is of an entirely different nature. Good, kind doctors with lots of empathy have identified the need for better follow-up of child cancer survivors many, many years ago. In 2017, a new unit opens – that really offers nothing new to me. It’s a good start for other survivors, I’m just afraid that this is where it ends. We can’t let that happen. My suspicion is that it comes down to resources rather than a lack of need or interest from oncologists.

Abandoned

I have yet to receive my high school diploma yet, though I’m assuming it’s due to Easter and that the folks issuing them have some time off because of that. Nevertheless, you never know with bureaucracy. I’ll assume that there’s nothing wrong though and no mistakes have been made and that I’ll receive it shortly.

Due to the fact that I had to delay high school due to my illnesses, I had right to what’s called “Aktivitetsersättning vid förlängd skolgång”, translated it’d be, “Activity compensation due to prolonged schooling”. You always receive compensation as if you’re 100 % “disabled”, even if you only read at a 25 % rate – or have to drop out for the semester. The reasoning is that you’re meant to study to the best of your ability – not study and work. It’d defeat the purpose. You need to fill out an application and have a medical certificate to receive this. Only someone whose schooling was adversely affected by an illness (or injury, I think) would have the right to these benefits.

I’m now done with my studies and until I’m 30 years old, I’ll be entitled to “Aktivitetsersättning vid nedsatt arbetsförmåga”, which would translate to “Activity compensation in the event of sickness”. In order to get this, I need to fill out a quick form – and my physician need to write a comprehensive and extensive medical certificate because she has to explain why I can’t work, at all, for the time being and the foreseeable future. It’s odd because you only qualify if you can’t work for at least one year, but they only grant the benefit for six months. It doesn’t matter for two reasons, the first being that I can’t work, at all, for the next year. Secondly, I’ll be thirty by this time, at which point I’ll cross over to another form of compensation.

Another letter from Försäkringskassan. Life after child cancer....Letter from Försäkringskassan. Life after child cancer....

My hope is that in a year or two, I’ll be able to do something. There’s nothing wrong with learning something for any other reason than to simply learn. Having said that, I wouldn’t have tried so hard to finish high school despite my fatigue and numerous health issues if I had zero prospects of ever being able to work, or end up with a job that’s just there for me to work – I want a real job. I might as well have focused on things I’m more interested in and learned from home and just live on the money I’d get for my disability if that was the case.

I know I have what could be called a handicap. I’m not handicapped mentally in the sense you’d normally ascribe it; however, my memory is not as good as it used to be, I get tired far quicker and tasks tend to take slightly longer time for me to complete. My oncologist has suggested that may I have mental fatigue caused by the pancreatitis – she’s looking in to it, to see if I can get a diagnosis. I appreciate this very much and I hate to use this against her, but if the system had worked it wouldn’t have taken 12 years to pass before for someone to figure this out, especially considering that I’m now done with school… Nevertheless, this hasn’t hindered me to get good grades in the subjects I’m strong in, it just took a bit more effort.

I’m not physically disabled either really. I have many physical ailments of various kinds but I don’t require a wheelchair or other aides. At this time, and for most of the time, frankly, the biggest issue has been the fatigue. This fatigue is always there and it has been since the chemotherapy treatment, even when I managed to study at a 50 % pace, bike to school and work out. After that, I had no energy left to cook food or clean, or do anything really. Ever since the child cancer, I’ve been drained of all energy.

When it gets worse, though, as it is now, I’m just completely knocked out. I have had about two years that was “good” out of 12 since my chemotherapy treatment ended. The issues with my pain was less palpable and my memory improved a bit as well during those two years. If it could be like that, I could work 50 % – the problem is that fatigue is a symptom of something. It’s sort of like pain of unknown origin – you can feel it, and when it’s really bad, others will notice as well, but most of the time, you’re the only one noticing it.

If the system had worked, things wouldn’t have gone this far. I’ve said this before and I’m now saying it again – my treatment ended in 2005, I slept through several Christmases in a row because I was so tired – I slept till 4PM and I was still tired. In 2009, I got depressed because a friend died in cancer and I was put on new antidepressants (mirtazapine/mirtazapin).

Suddenly, I was a new person. It took a long time for me to get back – I’d been too tired to exercise for so many years and I gained weight during the chemotherapy treatment – 10kg the first week (22lbs). I went from 65kg (143lbs), which was mostly muscles to 95kg (209lbs), which was anything butt (heh) muscles. That combined with all my other health issues meant it took time – but I slowly lost weight and finally, around 2012, I was in decent shape. I lost the first 25kg (55lbs) on my own at a rate of roughly 0.5kg(1.1lbs)/month – then I lost the remaining ten with the help of a dietician and physical therapist in about three months.

No one bothered to figure out why I was so tired before though, someone close to me had to die for me to learn why.  I realize my reasoning here is deplorable; obviously, her life is more important than my problem, but what if she never died? How long would they allow something like this to go on? I lost many years due to a depression that I was treated for, but the treatment was obviously ineffective – and the years they passed.

The most dangerous thing you can do in a position such as mine is to ask, “what if” – because it is, it was, it happened. However, it doesn’t mean we can’t learn something from it. I can’t move on until this stops though – they pumped me full of venom, when I changed my mind about the treatment, they did it against my will, and then they abandon me. It’s unacceptable, it shouldn’t be like that – this is the reason I started this blog, amongst other things, it’s the reason I’m essentially writing uncensored. I want to see change, extensive, change – but I also want my story to be known, I’m not entirely altruistic.

I have yet to have any issues with Försäkringskassan (English), which are those responsible for compensating me and others who fall ill, or for other reasons, but we’ll see what happens. The point of this post isn’t to rehash old things but to share with you a revelation. I got the doctor’s certificate for the Activity compensation in the event of sickness and I read it – and I know all these things about myself. Everything is accurate, but when I read it on paper, from a doctor who’s gone through my medical records, it felt surreal. I guess I have tried to ignore some of the reality of what my future life would be like.

If the new unit that opened doesn’t expand to include specialists from more fields, or if I truly am the only one, or part such a minute minority with these extensive issues, and if they cannot find a sustainable individualized treatment plan, I’m fucked. It’s been 12 years, I think it’s been proven that this doesn’t work, that this is unsustainable.

I figured I’d share what my doctor wrote, and show, that this is what the chemotherapy did to me. There are two documents, one describe my background and one what it’d take for me to be able to work. Translating things are so incredibly boring and time consuming, and in this case depressing so I won’t translate it, I’ll just summarize. You can use Google’s Translate app for your phone, although it doesn’t work fully.

She brings up almost all the various specialist units I’ve been treated at, the side effects from the chemotherapy, the pulmonary embolisms, the pancreatitis, which now has a more complete description as a “life-threatening, necrotizing pancreatitis with retroperitoneal bleeding”. Those who have followed me know I bring up the pancreatitis a lot, but that’s because it almost killed me, and it is responsible for my diabetes, lack of pancreatic enzymes; I did the gallbladder surgery because of the pancreatitis which led to the hernia, which was fixed, then it broke and was fixed again, until it breaks next time. Essentially, I did three open stomach surgeries because of the pancreatitis, and they are painful these surgeries. Furthermore, I don’t know what effect the pancreas has on my endocrine system, all I know is that it produce insulin, which is a hormone. That the exact type of pancreatitis keep changing is annoying to me as well, but it’s important for me to know, for the above reasons and the one in the next sentence. My surgeon, who were in charge of my treatment, simply said I shouldn’t have survived it. This was of course months after it was over and not during. I remember the bruising – I couldn’t find a single picture on Google that matched it, all I got was pictures that resembled it. Anyway,  I was apparently between stage three and four when the cancer was discovered, which I either forgot or just learned.

For the eagle-eyed you’ll notice she made a mistake regarding the actual cancer diagnosis, naming it “non-B-non-Hodgkin lymphoma”. I suppose it’s not entirely untrue since it’s not B-cell I had, but there’s at least one more non-Hodgkin’s than the T-cell so it’s not accurate enough. Anyway, ironically enough, that’s not important at this point – she said it, I said it, it just needs to be included for context really. I reached a point a long time ago where I’m less afraid of the cancer returning than I am of getting yet another side effect. I’m also no longer affected by the cancer. She’ll still revise it though, for clarity – I can’t have B-cell one day and T-cell the other, it will look suspicious.

In the other document, she describes why I can’t work and what it’s going to take for me to be able to work, and what sort of work I could do – which isn’t much, it seems, even with special accommodations. All from getting child cancer at 15.

When I was in ninth grade, I wanted to study to become a lawyer. After the chemotherapy treatment, I was thinking of becoming a journalist, but considering that the profession is dying out, it’s not a particularly sustainable career alternative. I wanted to do something with IT instead, and then write as a hobby. The years passed though, and it took me ages to get through high school, and we’re back to the “what if”. Maybe in 2005 I was still tired from the chemotherapy, maybe even in 2006, but beyond that? I doubt it.

You can learn a lot about the future by looking at the past, and if my past reflects my future, there’s no point in even attempting to aim for higher studies. That’s what’s frustrating about running at half capacity; everything takes twice as long. A three-year program becomes six, a two becomes four. I can’t change the past, though I can change the future. However, my past is weighing me down – if I were to find a program that suits me, which progress at a rate of 50 %, it’s going to take six years if I want a decent education. I’d be 36 when I’m done studying and I’d have to live on nothing meanwhile. My past hampers my future to a degree that it feels like it’s ruined.

I don’t know what sort of special work they have in mind, but I’m not taking a made-up job just to have somewhere to go. I don’t mean to look down on Walmart Greeters – I’m sure they find meaning in what they do – I hope so, at least. I wouldn’t find meaning in it though and it’s the only example I can come up with. If I end up with a meaningless job, I’ll lose my mind, literally – it’s not what I’ve been struggling these past 14 years for. I still need to get challenged in some way, there needs to be some value in it for me.

Changes needs to be done in how child cancer patients are followed up. How could they let this go on for so long, 12 years, without even trying to find a long-term solution? I’m sorely disappointed and I’m doing all I can not to get stuck in the “what if”-swamp. As I said, I’ll never get out fully unless I get help and things change so future child cancer patients aren’t abandoned like I was.

If I can’t work, I’m going to have to have to live on nothing for the rest of my life, because I was unlucky and got cancer at 15, and I happened to be oversensitive to one of the chemotherapy substances they pumped me full of when I dealt with the child cancer.

Is this what I’ve been working for, these past 14 years, to survive, just to be alive, on the edge of ruin, turning every coin, being afraid they’ll cut down on my compensation because of a new government takes over, or the budget changes, completely ruining my economy? Because of child cancer?

Is it what I deserve, for getting cancer at 15, being pumped full of venom, against my will, only to be abandoned because there was no system in place to take care of me, after they annihilated me? There’s a difference between being alive, and truly living. Merely being alive is not enough, it doesn’t make it worth suffering through the chemotherapy treatment, and the 12 years after like I have done.

The system is broken, they’re starting to fix it, but it’s too late for me now, especially at the rate it’s currently going. As I said, those responsible should feel ashamed, this is not what Swedish healthcare is meant to be. Pathetic…

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