Right direction, but not quite good enough

I can’t pretend to represent all child cancer survivors as we’re a diverse group.  First you have the type of cancer, then the location of the tumour, then there’s the treatment that everyone reacts differently to. On top of this you have the other medications being used – morphine for instance can have an impact your endocrine system. My testosterone deficiency may have been caused by the morphine, for instance. Withholding morphine would have been cruel though; it was a necessity.

So, we have a group that suffers from endocrine system imbalance, depression, PTSD, trauma, neurological issues, chronic pain, fatigue, mental fatigue, amputees – I feel I’ve made my point here when I say we’re a diverse group of patients. I know I touched on this subject before but I feel it deserves its own post. As it stands, I personally have contact with numerous specialist units at the hospital, and two or three more are being added, though one of them only temporarily. These contacts become time consuming and difficult to manage. Furthermore, when something happens I need to wait three months, or more before I can get in contact with a new specialist.

Oncologists have known about late effects for a long time, but what is being done? I read a Swedish article from 2010 regarding this, where one of those who’s behind the new project is interviewed. Let’s assume this was the first article ever written about this, which is highly unlikely. Nevertheless, let’s assume that is the case – this means it took them seven years to put in place a system where we’re summoned to answer some questions and then get a referral if needed, just like what my primary physician could do. I would like to do some digging and see where this subject first appeared as I believe they knew about this long before 2010 but once more – I can write about my experiences but I can’t handle other’s.

What we need is a diverse group from many fields working as a team in one unit. You could have a counsellor, psychiatrist, pain relief specialist and so on.  I’ve said it before and I’ll say it again – such as the system is now, there’s no hope for any meaningful improvement, at least not in my case. I’m forced to keep trudging through the morass that is Swedish healthcare, getting nowhere – and again, I doubt I’m alone.

This initiative was a great first step, but the fact that it’s so long overdue worries me. If it takes such a long time to form a unit of one oncology nurse and one oncologist that summons three adult child cancer survivors every Friday, I assume except on holidays, how long time wouldn’t it take to organize a unit of which I’m talking about?

This is about my future and the future of others like me – we need access to healthcare with a higher standard than we have now. For years, we’ve been offered the same care as everyone else, despite the multitude, magnitude and uniqueness of our issues. This new late effect oncology clinic, as I have had it explained to me, will essentially be more of a secondary health clinic rather than something that will substantially increase the care we get.

The reality of my life the past few years has been that I got better, I lost all weight I gained, I studied at a 50 % pace, commuted by bike to school and the gym three days a week. Then suddenly I start getting tired, panic attacks, restless; it was a complete mess. This was the testosterone deficiency – after several months I got better before the referral to the psychiatric unit was responded to and I started again with the aforementioned routine. Then sometime in late 2015, I got progressively more and more tired – I did continue going to school but it was rough. Eventually had I had to quit the gym and soon thereafter I could no longer commute by bike. During much of 2016 I didn’t have enough energy to go outside and I had to quit school.

Every single time this has happened, I have crashed and burned – despite having a good primary physician. It simply takes too long to get specialist help and your primary physician was never meant to deal with us as patients, subsequently they don’t know how to help you while you wait for the specialist because it’s beyond their expertise. Those three months, assuming they manage to follow that law, is a long time if you’re severely depressed and the emergency psychiatric healthcare doesn’t work.

How many more of these episodes can I handle before getting a psychosis, or I simply give up? I don’t know, I have a lot of fighting left in me, however knowing your ally doesn’t, isn’t really inspiring me to want to keep fighting because some things are clear – I hate hospitals, I hate the healthcare system, I hate medications – but I’m dependent on it all. For all the new readers, this recent depression I’m having was caused by a doctor’s error, which I’ve reported to IVO. I hate it, but I need it – they made sure of that.

I didn’t even know of cancer related fatigue until recently, and by recently we’re talking months. I had been informed that I could get sick even after the treatment, but no one ever mentioned late side effects as a concept or word. The point here is that when you have a name for it; you know that it exists, you don’t live in a vacuum – you can find others like you when you get a name for it, and then through concerted efforts, things can change. Otherwise you’re the only one on the planet with this issue and no one is ever going to devote resources in such a way that you could be helped

I worry about my future because as it stands, I’m not getting the care I need, when I need it. I don’t know if I’m tired from something specific or if it’s just fatigue, which is not a disease but a symptom. What if I have mental fatigue caused by the pancreatitis like my oncologist suggests? Now I just feel angry because these things I’ve experienced have been confusing to me; no one ever said, “it might be a late effect from your chemotherapy treatment”. I never connected the dots, I didn’t understand why I got tired. It’s been so many years and I received so little help from the oncologists after the treatment. I worry that these periods of fatigue will keep coming and going like this, I wonder how it will be treated.

My worries are legitimate, looking at the past. I might be able to work 50 % for a year, then 0% for two years. To me there’s no value in life if that’s what it would be like. I’m starting to worry about moving to my own place; even when I have a good year, when I get home after school and the gym, at 2PM, I’m exhausted and can’t do much else other than lie down and rest. How can I do regular housework if such is the case? In terms of economic stability, will be become one of those who are doomed, in my case since the age of 15, to get the bare minimum of financial aid?

This new initiative is too little, too late. It’s time to start to make some real changes. I’ve had my good years, which were few, and my bad years of which there were plenty – were I to have had proper care from the start, things could be different.

Maybe I’m just saying this out of frustration because I’ve been abandoned by the oncologists for so long and only now they realize that the system is not working and the new system is inadequate to meet my needs, and once again, not only my needs but other’s as well.

I don’t know if I have PTSD or it’s general trauma, but if I read an article or see a child cancer patient, I can feel the adrenaline pumping, I get a little nauseated and I start to sweat, my muscles tense.  You could argue that I could always look for help myself, the problem is that most psychologists are unable to see my point of view – they never seemed to understand that I was angry that they forced the treatment because they had decided it was worth it, seeing how it ensured my survival. This was one of the issues I wanted to get help with at this new clinic.

I feel let down by the system, the ignorance of late effects is a big issue and while yes, this is a step in the right direction, it’s a very small step.

Was it worth it, going through the treatment? If things continue like this, the answer will be a resounding no. I need to get over the chemotherapy treatment, if it’s even possible. Thinking back to some of the things that happened during the treatment yields the same response as above when I spoke of PTSD. The only way my sacrifice during the treatment could be considered worth it, is if they start taking me/us seriously and give us the support we need. Those who haven’t gone through chemotherapy or other related treatment, go to the home page on this site and read the posts about treatment and diagnosis.

Some might call me negative, but I’m 29 and I got cancer at 15, which means I’ve been sick nearly half my life and I’ve been waiting for things to change, for me to get help and then we get this? No, we cannot just say “thank you please” simply because they’re trying; we need to demand proper care.

I do wonder how other nations are handling these issues? Have they progressed farther or is it as bad where you live as it is here?

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