Child cancer survivors – why some physicians shouldn’t treat us

There are some medications I never speak of on this blog, for many reasons. Since my name is public and fairly unique, it could pose a danger; it could also give you the wrong impression of me – namely that I’m an addict. This is why I vaguely reference antianxiety medications as just that – antianxiety medication. I’ve never done drugs, unless you count the ones you get at the hospital. Any time a doctor or nurse ask you this, say “no, except for the morphine”, which they’re giving you. They don’t like that joke.

Enough is enough though; I want to explain why I’m currently depressed without hiding the details behind a veil because things are developing in a way that’s unacceptable.

During 2016 I was on Xanax XR/Xanor Depot (XR = extended release, substance is called alprazolam) for anxiety – it was under control thanks to this. The only two benzodiazepines that have an effect on me are alprazolam and midazolam, if it’s injected or administered orally at a very high dose, otherwise the effect negligible. Even though I don’t drink and I haven’t taken alprazolam or any other benzodiazepines for over a year, a starting dose for me is 2mg – I can take 6mg in one go within a week or two and you wouldn’t notice a difference, without over consuming. I wish I was a girl so I could get roofied, or rather pretend to, and then cut their dicks off when they realized it didn’t work. Although in fairness it would work if it was mixed with alcohol. Diazepam (Stesolid/Valium) has no effect on me, even when they gave me 30mg.

When I removed my port-a-cath they gave me 6mg midazolam orally combined with 400mg of ketamine – they realized I started to get stressed and quickly injected something else and I was out. Or as it says in the records: “the aforementioned medications had no notable effect on patient and once it was time to insert ?“pvk”? he was very stressed. Putting the needle in went fine, he got 100µg fentanyl at which point he became calm again”.

I’m not in the mood to translate that entire thing tonight, but feel free to read about the epileptic seizure etc.

Medical records.
Medical records in Swedish. Google has an app to translate images.

I saved the date, name of the doctor as well as what I experienced and I wanted to discuss this with him further. In Sweden, we have online access to our medical records in most counties, so that’s where I took the screenshot from, that’s where I’m getting my information. He gave me 6mg of midazolam, which translates to 0.5mg alprazolam – this is despite the fact that I pointed out that I’ve done so many surgeries that went bad and that I’m anxious before this one. The point is that he seemed to think that dose would be enough whereas it didn’t affect me at all. That means that he didn’t believe me, he thought it’d be enough, or he’s incompetent or maybe ketamine is strong. The point here is that he concludes I’m so resistant to drugs that he questions whether it’s worth using them pre-op. That’s not happening though; they’ll just have to give me stronger stuff.

I was on alprazolam XR/Depot during 2016 and despite me asking my new, temporary primary physician if we should phase it out, he did it like a fucking hippie, he never made a schedule; sometimes it went two months before we did the next change. Then suddenly he stopped smoking his weed and actually did a schedule – at my request…

Around the 20th November I quit completely, from the dose of 0.5mg alprazolam XR/depot per day to zero. I got withdrawal symptoms I recognized for a few weeks. Since I’ve had one of these events before, I’ve been on Xanax for a few months – worst months of my life since they make you forgetful.  I was on morphine for many years after the chemotherapy as well, purportedly because of pain coming from the pancreatitis but just last year it was re-diagnosed as nerve pain from severing of the nerves and muscle tissue during the three surgeries.

So at this point I’m having regular withdrawal symptoms you get when you’ve been on an addictive medication – your body think it needs  it, when it don’t get it, it thinks something is in disarray. Yet then these panic attacks started to happen and I didn’t recognize them – they were real bad, I couldn’t eat essentially anything, I threw up when I tried and I lost several kilograms in weight in a week. I tried to counter with exercise but I ate at best 500kcal in a day and went for 2-4 hour hikes/bike rides. Yes, it’s possible to ride a bike when it’s snowy. Doing that without eating meant it lasted for two weeks.

These attacks got worse and worse. You see, my doctor, who “helped” me quit with one of the most addictive benzodiazepines didn’t actually  tell me of these warning signs, he didn’t follow up on me by, say making a simple fucking phone call once or twice a week, give me a number to him, a nurse or someone I could call for, for advice – or ask the damn secretary to call me and check if I feel I need to talk to the doctor.

It started, these attacks, somewhere somewhere mid-December I think and by the end of the year I had to go to our local clinic urgently. I was put me back on 0.25mg alprazolam, twice a day and I just felt how the past month’s pain would soon become a reality in the near future once more. I felt fine for two days – then the depression came back, and then the anxiety – this time much more severe. I read on the Internet, my doctor didn’t make this transition as easy as possible, which he should have since I’m an epileptic.

I did everything right, I quit with the medication after his directions, I’m even the one who fucking instigated the conversation about making the damn schedule!  He, on the other hand, did not do two things that were easy and could have saved me, at this stage, I don’t know how much time and suffering.

  1. Switch to a lower strength benzodiazepine – I managed to quit with regular Xanax before, why not this time? There’s NO REASON NOT TO DO THIS unless you’re in a rush. He wasn’t in a rush before seeing how two months could pass before any change was made – and I couldn’t lower dose myself since the pills needs to be intact for the extended release to function properly. Did the privately owned Capio VC need to reduce the number of patients on these substances before the end-of-the-year report?
  2. I got no support, what so ever. If we could have had phone contact, when these attacks returned, the attempt could have been aborted. But I got nothing.

This physician was fired and I’ve reported him and I’ll also ask for compensation for pain and suffering.

My new physician seemed to be the kind of physician the last my real primary was. We understood each other. I’ve said that I’m giving it to the 8th of April – then I’ll start phasing it out no matter what. However considering current events, that’s too late – but tomorrow, is too early. I am stubborn and I do have strength that shows itself when needed, my old physician knew this. Anyone who read my medical records should know.

I’m back on Xanax and another antidepressants – the problem is that the antidepressants haven’t yet reached its full strength yet – we increased the dose two days ago, and during these two days things have gotten worse, which is normal for antidepressants. Quitting or reducing the dose of alprazolam under these circumstances is not possible. I’m on a higher dose than one should be on – I always am. If it weren’t unethical I’d like to do a controlled test where we each take the maximum daily dosage of alprazolam (6mg) and see if you’ll notice it – without any cheating by building up a resistance.

I wanted to go quit, I did quit, but my doctor failed me. I might have failed anyway, but please answer, did he really put in the effort to give me a chance? To me the answer is no and I’m confident I’ll prevail through all the proceedings – the insurance, the IVO-report.

Now that I’m trying to quit again, they want to send me to a clinic.

I quit with morphine on my own after five or more years when I could manage my  pain with exercise, I quit with alprazolam once I got better after the whole testosterone thing, I quit with alprazolam this time, though I got a relapse – but is it that strange, considering the doctor’s complete lack of competence?

I’m a child cancer survivor who has been traumatized by the healthcare system and they want me to go to a clinic and leave urine samples because all  everyone is equal. Fuck equal, if you’re doing illegal drugs, you’re there for different reasons, different backgrounds. I’m a patient that needed a medication that is addictive – it was poorly handled from the start and as such the only viable option.

I’m not a criminal, I will not leave a urine sample, I will quit as I always have done with assistance in concert with my physician. I’ll never leave a urine sample for a purpose like this. They can kindly fuck off.

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