Healthcare’s failure to treat child cancer survivors

Insulting

Yesterday was the 24th, something I’ve referenced in a few posts. It was the day this new unit was opening, where I was hoping to find a solution to my long term health issues. If you look at the forms, it seems obvious it’s areas you feel you need help with. In reality it turns out it was a questionnaire to make the care better for future patients so they know what to focus on. This turned out to be simply yet another cased of failed healthcare

My hopes were indeed too high. For me, no real change appears to be happening.  What is new is that they’ll summon now-adult child cancer survivors to check up on them, give them advice – like what they should think about if they’re planning to have a baby or what to keep in mind you want to become an elite athlete.

The forms I showed you shouldn’t have been sent out to me – the entire thing was confusing, those forms were intended for people new to this place, not someone who’s already a patient. They basically release the children after five years, my treatment ended in 2005 so I’ve been going for 12 years – I’m (amongst) the oldest one there, apparently, in big part because I was relatively old when I got ill but also because my health status is not stable.

This was a huge disappointment to me and I do not really understand what has happened until today when I write this post, or when I’m writing it now. I thought that they had assembled a team with nurses, a doctor or two, psychiatrists that knows about cancer. I also hoped they’d have some sort of counsellor there that good guide me through various charities and what they can offer in terms rehabilitation  which I feel I’m in need of after these months. I thought they’d work as a unit, but I was wrong.

Essentially, if I understand correctly, things are changing for most adult child cancer survivors as they were let go after five years – I wasn’t. It wasn’t entirely a waste of time as I now have the direct phone number to the nurse and I’m able to ask them for help. To clarify, the change was that every Friday they’ll call in three patients to discuss relevant things, depending on where they are in their life, give advice based on their life, allow them to ask questions. The programme they’re talking about is called SALUB.

I never say this because it leads to a childish competition where the winner is the loser and both are morons. However when I hear that they’re intending to give advice on fertility or if someone wants to become an athlete and need advice as to what to take into consideration in such an endeavour I have to say what my doctors told me, as I sit here in my bed with barely enough energy to go outside.

Although my cancer was treatable and I lived, I did get, well, an above average number of side effects – my child oncologists were scrambling how to solve things – for instance when I got the thromboses in my lungs/legs, despite being on blood thinners you can see how they’re scrambling, the word “not sure what the next step is” tend to come up. We’ve read, or rather my mom did, the medical records.

After I had the acute necrotizing pancreatitis with fluids gathering and I was safe my surgeon told me that I shouldn’t have survived the pancreatitis and that he didn’t understand how, apart from how good a doctor he is. That last bit was a joke. I’d love to see the statistical chance for me to survive that pancreatitis with all factors involved.

When my oncologist released me to the adult care he said that I need to take it easy, let time take its course. It’s important to start with school but I could not have handled many more side effects and still have survived; as such I had to be careful and not stress just because I lost a few years. I saw this new, the 24th-unit as my only hope for a decent life. I should have known better than to put my trust in the healthcare system. My trauma, depression, anxiety, fatigue are all very real issues and there are no solutions. I had a lot of side effects and I expected more support than I got.

In Nazi Germany they tortured people, did painful medical “trials” on children who died because they intentionally infected them with bacteria or viruses, to see what happened. Suffering in ways I can’t imagine. In Syria children keep getting injured and dying; they keep seeing the atrocities that wars bring with it. They come to Sweden and we ought to take care of them properly, and we don’t, we send them around the nation, never allowing them to settle in.

My point here, friends, is that this is not a competition, it’s a reality. Cancer isn’t one disease; it’s a name for hundreds of them. I know there are some here who might be dying but still feeling relatively energetic. You know and I know it can change quickly. I truly don’t wish to diminish anyone’s experiences or feelings, but when I go to the oncologist in hopes that they’ll help me get in touch with someone who can help me get over the trauma I experienced, to help me with the fatigue, depression and many other things, it feels insulting when I’m trying to reach a standard of living where I can actually walk out of the door and still have enough energy to at least sit down, when it seems other’s are asking for advice in becoming an athlete. I do not get that.

I described them as my only hope and I was genuine. They say hope is that last thing that leaves you; were that to be true, I’d be dead now. I’m only glad I got this meeting now when I’m more stable, I’m feeling disillusioned beyond comprehension. I’ll have to get in touch with them and ask some questions.

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