After cancer treatments, Marjolein Assenbroek (59) has to kick the habit of painkillers. And that turns out to be a tough task. “Nobody told me this drug is fifty times stronger than heroin.”
Christien JansenPetronellanittaSeptember 9, 2023, 10:00 am
“My husband and I got married on January 2, 2017. On the advice of my doctor, who seriously doubted whether I would survive tongue cancer, which was discovered almost too late and turned out to be related to HPV. The town hall in Wassenaar opened especially for us, our children, family, friends and loved ones were there. It must have been beautiful and moving. I heard that, because I have no memory of this special day. I find it very sad that I got married and don’t even remember it anymore. The reason: I was on painkillers fentanyl, oxycodone and oxycodine. Extremely addictive, fentanyl is fifty times as strong as heroin, but I didn’t know that at the time.
Quack
In the spring of 2016 I started to ail. I started having ear and throat pain that wouldn’t go away. I watched it for a few weeks, went to the doctor and was referred. To an ENT doctor, oral surgeon and neurologist, each time with the associated waiting times. No matter which doctor I spoke to, I would be very healthy. It must have been menopause or else I was working too hard. In the meantime I was deteriorating very quickly. I could barely talk, eat or work anymore. At night I banged my head against the wall to try to get rid of the earache. I went back to the neurologist, who asked me to stick out my tongue. It did not work. She didn’t see a problem with that, but I said to my husband, “It’s in my mouth.”
Back to the ENT doctor, luckily a different one than the one who had already sent me away four times. This time an x-ray was taken. If only someone had thought of that earlier: there was such a large tumor under my tongue that I was actually dying. I had to stay right away. I can still see us sitting in that hospital corridor. Anxious, confused, but also relieved. I was so happy that something had finally been found that I wasn’t a poser. Severe treatment was immediately started. There was a good chance I wouldn’t survive, but if we didn’t opt for treatment, I would die within six weeks. The tumor was too large to remove surgically. That’s why I had chemotherapy and then radiation. It was grueling and very painful, so I was given the strongest painkiller: fentanyl. A drug dozens of times stronger than morphine. For every sound I got a fentanyl patch stuck on. I suspect they thought: that poor woman is not going to survive this, let’s just make sure she isn’t in pain. I didn’t know that fentanyl is fifty times stronger than heroin and just as addictive, affects your breathing and is used in euthanasia. There was no doctor or nurse who informed me about this.
From sick person to junkie
The treatments lasted six months, which in retrospect I spent completely stoned. After those six months I was looking forward to feeling better, but I kept throwing up and still felt really bad. In addition, I was no longer the person I had always been. I was skin and bones and at the same time hyperactive and very restless. I left the house all the time. In my slippers, in my purple and pink floral leggings, with my thin short chemo cut, I walked around the blocks in our residential area for hours. It was as if my head was in a closed space where nothing could enter. I felt no pain, no emotions, everything was gone. There was only one thing that was important: when can I use a fentanyl patch again? In a notebook I obsessively kept track of when I took something and when I was allowed to take something again. Supplies were not a problem: I had left the hospital with bags full of heavy painkillers. I can still see myself standing there, crying, telling my husband that I wanted a plaster now, because otherwise I wouldn’t sleep. If he then showed that that was not possible, that I could not take fentanyl again until tomorrow, then I took a dose of the fast-acting oxycodone and the slower-acting oxycodine. It slowly dawned on me that there might be a connection between my pain medication and how I was feeling. I read the leaflets and was shocked. I had to get off these drugs. As quickly as possible. And when I want something, I want it immediately. So, somewhat naively, we decided to reduce the dose a little every week, but not on the weekends when my husband’s children were with us. That would be too intense for them.”
Kicked the habit too quickly
“The withdrawal – because that’s what it was – was terrible. From early to late I was wondering: when can I have another shot? I walked hysterically through the house looking for the only box of oxycodone that my husband had not returned to the pharmacy. Shaking like a junkie, skin and bones. Every time the dose went down, I became a witch, a fury. I couldn’t control myself, I was constantly worked up, I could fly into a rage over nothing. One wrong word and the house was too small. Fortunately, the children were relatively out of harm’s way, but my husband had a very hard time with me. No, I was not a nice person during that period. I actually think it’s a miracle that he’s still with me. I kicked the habit in eight weeks, but at one point I felt extremely bad. It seemed like my body was shutting down. I called my husband, he was on his way home, but I called 911. The ambulance arrived just in time: my blood pressure was so dangerously low that I was given injections and then immediately taken to the hospital. The fact that my son came home unsuspectingly, walked in and did not see me on the couch, but did see the medical equipment left behind, was very traumatic for him. I think it’s very sad that he had to experience that. In the hospital it turned out that I had kicked the habit far too quickly. I should have been supervised, my heart and blood pressure should have been monitored continuously. In retrospect, we should have contacted addiction care, but we were well aware of how dangerous these medications are. And then came the moment when I had actually kicked the habit. Until then the fentanyl had kept me going, now I was literally falling over. I couldn’t do anything anymore. My body was broken. I ended up in a wheelchair and could only start rehabilitation after a few months, I was so weak. Due to the treatments I could not eat properly and I had a vitamin D deficiency. I needed certain pills for that, but the insurance company thought they were too expensive, so I only got four. While I had to take two a day for a period of time. With the fentanyl patches I could have provided the whole of Wassenaar with a shot and I just got them, but not the vitamin D pills. That’s still the joke around here.”
Grateful
“It was only a few months after my detox period that I was able to start at a rehabilitation center. I was treated for three intensive months by a psychologist, dietician, physiotherapist and speech therapist. I have had to accept that I have aged twenty years in one year and have to make do with the body I have, and all the flaws that come with it. That remains a battle, every day. I remain afraid of painkillers. I will soon have surgery on my foot, but I don’t dare take paracetamol yet. It’s sad to think that I wouldn’t have had to go through all of this if I had had the HPV vaccine. Then I would still be able to smell and taste, my salivary glands would still have worked and my teeth would not be slowly crumbling. I wouldn’t have any swallowing problems and would still be able to eat spontaneously. I wouldn’t have to wear a thermal shirt, woolen sweater and scarf in the sweltering heat, because I’m always cold. But I’m alive! And I am grateful for that. Just as I am very grateful for the support I received: family, friends and acquaintances brought food and accompanied me to the hospital. My sister put her life on hold for six months to help, my uncles and aunts helped. That is what I remember clearly from that dark period. The Marjolein from 2016 is no longer the Marjolein that I am now. If I don’t feel like doing something, I don’t do it. Although that is also because my body is destroyed by the chemo, I only have half a battery left. This period has confirmed that I can do more than I thought. No matter what else I do in my life, I have already climbed Mount Everest. I have also mellowed out. The person who bumps into you or pushes you at the bakery may be carrying a large burden that is not visible. You often cannot see from the outside what is going on with someone. We could really be nicer to each other. What I also want to say to women in particular: if you have complaints for more than three weeks, do not let yourself be sent away, but keep knocking on doors until you are helped. Because complaints are all too easily blamed on the transition or on working too hard.”
Naive
“If I had known in advance that I would have had to go through a drug rehabilitation program after the treatments, that would have helped me a lot. Because I am not against these means. I was very ill, without those pills and plasters I wouldn’t have made it, and that applies to many people. However, I would like to argue that the danger of addiction is communicated. I had never dealt with serious illnesses before, my husband and I were very naive. In retrospect, I can only say that, even – and perhaps especially – if you are very seriously ill, you should continue to pay close attention to what is happening to you.”
Annemarie (37) also regrets asking her GP for ‘the toughest drug available’ because of a double neck hernia. “It was super numbing, but I also felt stoned.” Read her story and advice from experts at libelle.nl/oxycodone.
Styling: Karin van der Knoop. | Hair & make-up: Astrid Timmer. | Mmv H&M (dress), Zara (sandals)
9 september 2023
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2023-09-08 08:42:43
#Marjolein #shot #mattered
