Doctors at “Barnavdelningen för blod- och tumörsjukdomar 95 A” called me spoiled behind my back
Yesterday, in writing my book, I learned from mom that oncologists and nurses at my child oncology unit had said a lot of fucked up things about me to my mom, one thing being that I was spoiled. My unit was called “Barnavdelningen för blod- och tumörsjukdomar 95 A”, I will refer to it as the child oncology unit. First, they said I was spoiled – because I had a relative staying with me overnight, always. They felt it was not necessary; in fact, they said it was harmful or damaging to me, as they felt I did not get the chance to develop my own identity and become independent. I had an identity which the staff slowly but surely ground down to nothing. As for becoming independent – that would have worked had they actually listened to me when I had something to say.
Second, they felt I should have attended the hospital school. They insisted it was my mother’s responsibility to make sure I got there.
Third, it was my mother’s responsibility to deal with the anger I felt during this time. Before my treatment even started, they said it was natural to be angry. Sometimes I got angry, most of the time because they did not provide sufficient pain relief or they said something idiotic. I realized that when I got angry, they got angry too. Eventually I just suppressed it, until I broke and had an outburst, throwing a table. Previously, it was all verbal. Evidently, my feelings have been confirmed – I was not allowed to be angry verbally in practice.
Inadequate pain relief and belligerent staff meant I needed relatives to aid me in combatting this
I learned this yesterday and it was a devastating blow for me. I was very traumatized by the treatment, mostly due to their incompetence. Their inability to resolve conflicts, for instance. If a nurse wanted to humiliate me, like I describe in this post, it was open season. No one gave a fuck – nothing happened; there were no repercussions. Another issue was the pain relief treatment – it was a constant battle between us, meaning me and my relatives, against the oncologists. I was hospitalized for so many days that, as I have said before, I started to shut down emotionally, hiding under my bed cover and blankets. When I wanted to end my treatment prematurely, they did not ask why; they just ran me over, explaining that I cannot make that decision. I had suicidal thoughts and it got worse. Every time I got home from my longer hospital visits, I could feel how I was fading away as a human being.
Then I learn this – that I should have gone to school, learning that I was spoiled, mainly because my relatives stayed with me every night. Well, guess why they stayed over every night with me? First and foremost, it was to protect me against the staff and help me fight the ineffective pain relief treatment. Another reason was that I was always very ill when I was hospitalized, in great pain. Yes, I was 16 – I was 16 and going through a chemotherapy treatment where I got an abnormal amount of side effects. On this blog, I have not even scratched the surface of what happened – there is a reason I said I had no side effects the first six fucking weeks, apart from losing my hair, having nausea and extreme fatigue. This reason is simply that it pales in comparison to the real side effects I experienced.
It offends me to learn that they felt I couldn’t develop my own identity during this time because I had relatives with me. I was so broken mentally, I was always at the hospital – what sort of identity could I form? They claimed I would not be able to become independent, and they were right – because of all the side effects, and late side effects I got. I am chronically ill, I will never be able to work full time – I’m happy if I can work half-time, if at all. My life got ruined, but not because I had my relatives with me, but due to their treatment of me.
On top of this I constantly felt that the nurses and doctors often did not take my pain seriously. There were two nurses who even said outright several times that, “you’re not in that much pain now…”. Other times I noted that I did not get pain relief despite gauging the pain on the high-end on the 1-10 VAS-scale. What pain relief I received was more dependant on what doctor and what nurses were on duty at that specific time – not what I gauged my pain-level to be at. What my oncologists were writing in my records were not how to handle my pain, but that they felt the morphine dose was too high. I had fucking cancer and I was hospitalized for 170 days! When, if not under those circumstances, are you supposed to use morphine?
I did intrathecal injections, as I have mentioned when I told my story about how I got my diagnosis. I do not believe there are any significant differences than having an epidural, which is used mostly during childbirth, compared to this procedure except that they insert it in a different vertebrate, I believe. Another difference was the pain during the actual injection, which was painful. (I did an open stomach surgery and got an epidural, it was the best pain relief I ever got and I did not even need morphine, if I recall correctly). It was also psychological though – someone is inserting a needle in your spine, or the spinal canal. This psychological factor is still present in me, I might add. As I was child I was given the option of doing these procedures by sedation with morphine and midazolam, a powerful benzodiazepine, or with general anaesthesia. I tried a few times to do these procedures without general anaesthetics – only sedation and morphine, and it worked fine – until it didn’t.
By the third time, they switched the morphine to pethidine, a fully-synthesized opioid. That procedure failed – the pethidine had a completely different effect on me. I told them to stop during the procedure because it didn’t feel right, but they kept going. I was furious afterwards and so was my mom, and I asked them what they did differently and why they did not fucking listen when I said that it did not feel right. They claimed they did the procedure the same way as always – giving me morphine and midazolam. They were reluctant to show me the medical records however; they insisted a doctor were to be present “to explain”, and none were available at that time. My mom and I kept saying, “give us the medical records” over and over – it was our right to demand it. Suddenly, a few minutes later the doctor who did the procedure came with my medical records. What they wanted to explain was that I was given pethidine instead of morphine – which they claimed was the same thing. That is most likely what they wanted to “explain”.
However, they are not the same.    They are similar, yes, but they are not the same. Ask any doctor and they will say the same thing – you can never know how someone will react to a new substance, whether the differences are subtle, or not so subtle. Admittedly, the difference should not have been as great as it turned out to be, but it was. Why change substance when it worked so well the previous times? A few years after this happened, I spoke with my doctor specializing in pain relief. This man happens to be well-known and renowned pain relief expert and doctor working at the hospital in Uppsala, UAS, and I asked him “is pethidine and morphine the same thing?” The answer was a resounding no. Not only that, he could not see any reason to use pethidine over morphine, in general. Some doctors believed pethidine was less addictive, which had been proven to be false – this happened to be one of the reasons why my oncologist switched substance.
In 30 days I got…
Hospitalized three times, for a total of two weeks, a blood transfusion on my birthday, shingles twice, pneumonia, an extensive thrombosis in my lower leg, 41°C fever and critical drop in blood pressure, and a pulmonary embolism and the pleasure to spend Christmas at the hospital. It did not get any better. Yeah, I was so incredibly fucking spoiled.
Apart from these fuck-ups there were several others, similar ones that occurred constantly. Apart from the pain relief failures, their staff had sudden outbursts directed toward me, like the ones I mention in this post. I was a demanding patient, yes and I still am – I demand the care I have right to. On top of that, I spent 170 days at the hospital the first year, often in great pain. Six weeks in on my treatment, I did not have any side effects except hair loss, nausea and extreme fatigue.
However, 2003-12-20 I got the shingles and an infection in my medical port which I believe required antibiotics, and I got a relatively high fever of 39°C (102.2F). During this time, there was no efficient medications against nerve pain, which is what shingles produce. I had shingles stretching from my my very upper arm, down to my hand. I was released home on the 31st, then I came back January 1st, yes, the day after, and they discovered a deep embolism in my lower, right leg. It was at this point that I had to start with the painful injections of blood thinners, twice daily. Since I got several blood clots, I was on this medication essentially for the entire duration of my treatment.
My treatment continued of course, and I was hospitalized for a few days due to that. On the 14th, on my birthday if I may add, I needed a blood transfusion. On the 16th, they discovered a minor pulmonary embolism. I was hospitalized once more around this time. This time it was for the shingles, again and the pulmonary embolism, as well as pneumonia (I first thought it was blood poisoning but I was wrong). I got 41°C (105.8F) fever, I had a very sudden and serious drop in blood pressure, prompting the staff to tilt the bed so my legs were above my head.
I still remember that I got annoyed when they did this, and as usual the nurse responded in the most “professional” way she could, in an annoyed voice. “If you want to live we have to do this…” She could have said: “Erik, you’re really sick, we’re trying to help you, you could die.” She told me this whilst adjusting the bed, and all she would have had to do was to say two more words.
This is what happened in a month and it kept going, getting worse. My doctors did similar things as mentioned above repeatedly, this was merely an example. How was I spoiled? How could I trust my doctors when they lied to me, and how could I stay over alone when my concerns were ignored? When was I supposed to attend school? Why did they say that it was OK to be angry, when it wasn’t?
Contacted my former oncologist demanding answers
I sent an email to my former child oncologist – I did not plan on bringing anything of this up with him, but once I heard mom’s notes regarding this, it crushed me. Partially for the reasons above, but also because we apparently disagreed vastly about much energy I had. They felt I should attend school whereas I was content if I could watch TV instead of simply laying there, in bed not doing anything but staring into the ceiling or a wall. They always said how energetic I looked, now I know that it had actual consequences for me. I did not show weakness or pain in the same way as others my age did – it is why I was used in the lecture to show, “how healthy a 16-year old can appear to be, who has two weeks left to live”. Unless she thought I was unaffected by the symptoms… She said that I was 16 whereas I was 15 in reality. Sometimes I simply say “15” so I do not have to explain this. There is a very simple but terrible, sensitive and personal reason that I hide weakness, but I cannot tell you here; my closest friends deserve to hear the entire story from me personally first.
All of this just means I need to keep working on my book; this is fucking pathetic. I was critical of my treatment at Barnavdelningen för blod- och tumörsjukdomar 95 A before hearing this – now I am not even sure how I can describe it.