What doesn’t kill you, gives you side effects.
I used to think that hangovers were really good teachers: through intense regret they teach you to never intoxicate yourself again.
Pain is an evolutionary mechanism that tells us to not do something harmful to our survival, and I always found that hangovers were very useful in this regard: if you drink too much and reach a certain level of intoxication, your body will rise up in arms the next day and will have you begging for mercy and paracetamol. Chances are you’ll never want to drink again after it has you feeling awful, nauseous, craving some foods and hating others, disrupting your sleep cycle and acting grumpy around your loved ones. Hangovers will get worse over time, and the only real cure for them is to let time pass since you last intoxicated yourself.
Chemotherapy is a bit like that, but with a little caveat: you don’t stop taking the poison that makes you feel horrible.
And instead of alcohol, it’s drugs. And not exactly the fun kind, unless you’re asking for palliative ones. The standard regime for Hodgkin’s lymphoma features four cytotoxic drugs — which is fancy language for ‘drugs that kill cells’ — and other medications that help you not feel too awful.
Now think of the worst hangover you’ve ever had, multiply that by a hundred, extend it for about ten days, and do it all again on repeat for months. That’s how I can probably describe it best for someone who’s not had this kind of brew before.
I had my chemotherapy cocktail every two weeks, on a Friday, in the third floor of the hospital where the day unit was. Always the early bird, I would wake up at 6, choose what food I’d have for breakfast that I’d end up hating by the end of the day, don a cancer hat on my cold, bald head, and join my mum or my dad in the journey to the hospital.
I started treatment at the beginning of this year, so our chemo days would begin before the break of dawn, in mid-winter. And I say ‘our’ chemo days because it wasn’t just me doing it, it was also my parents driving me everywhere, taking care of me, feeding me when I couldn’t, and making sure this whole experience was a little less frightening for me.
I remember how my dad froze under his mask and through his eyes when I first walked in the day unit, probably having the strongest visual cue thus far that his little girl had joined the C-club. My mum was always there for me when I didn’t have the energy to wash myself, dress myself, or take care of myself, almost like chemo gave me a second chance at being a baby: once again bald and useless.
At 7am the day unit would open and every patient was given a number on arrival, which indicated when the oncologist would see us before chemo. And then there was a long wait: around two hours between having your bloods taken and a cannula put in place and actually seeing the doctor for the results that day.
Because my chemo took the longest, I was always called in first. I would enter the day unit room by 9:30 and leave by 16:00. I would see familiar faces come and go, some only for an hour, some I only met once. The nurse would chat to me as she hooked me to the IV pump and it started rumbling with an incessant heartbeat of its own, at times interrupted by loud beeps that heralded the need for a change in chemo bag.
I did meet people during my experience in the day unit, but it was nothing like what you see in the movies. Any patient you meet doesn’t really want to be there, and the first time I walked in the room I was probably too chatty for everyone’s liking. By the end of treatment, as side effects accumulated, I started feeling nauseous and horrible during the actual chemo session, so a lot less words came out of my mouth — probably a victory for the peace-and-quiet front. I became one more patient who did not enjoy further interaction than confirming my name and date of birth. No strings attached to anyone I met, and all strings attached to the machine instead.
I always got really cold. Because of the pandemic, the windows in the day unit had to be wide open to allow for air to circulate, even in winter. So I would pack three blankets in my bag and set up camp on my couch, then bury myself in it once I was attached to the machine. From afar, one could probably just see a pile of blankets and pillows with a long, thin tube coming out of them.
Cold temperatures and cytotoxic drugs are a nightmarish combination for anyone attempting to find good veins in a patient. The drugs are so irritant to the inside of your vessels, that inflammation occurs through their walls and they become fibrotic (hard). When that happens, those veins do not dilate easily and are impossible to use for venepuncture. Prior to chemotherapy, finding veins in my arms had never been a problem, but after the first treatment almost all of them had already disappeared.
By my fifth chemo, I had to figure out ways to make my veins pop out even a little bit for the nurses to find them because I wanted to avoid a surgery to implant a central catheter. So in the morning of chemo, I would go to the toilet while I waited for my turn for bloods, and I would do push-ups, sit-ups and squats to get my heart rate going and increase my body temperature, which would in turn dilate my veins. It sounds silly but it really helped, especially towards the end of treatment.
The actual chemotherapy session took about 5–6 hours each time. First I was given adequate hydration, then antiemetics (drugs to stop you from vomiting) and then steroids to counteract the destructive effect that some of the nasty drugs could have in my organs. All the cytotoxic drugs came in an orange bag with a danger sign on them, and next to it my name and my hospital number. They were easy to spot, and their names will stick with me forever.
The first one of the drugs to run through my veins was always vinblastine. After that, it was time for the doxorubicin infusion.
This one is used for a variety of cancers, and is the only one which has a bright red colour. Among the cancer community it is known as ‘The Red Devil’, not only because it is the main culprit for hair loss and giving a red colour to your urine, but also because if not administered safely it can lead to a very serious and rare complication of tissue necrosis (tissue death). That’s the reason why the nurse stayed with me every time as this drug was being administered, for about half an hour. Both of us watched as the drip slowly emptied into my body, her eyes scanning my injection site while I sank into paranoia and thought of all the things that could go wrong.
After that I had the bleomycin infusion, which was a breeze compared to the previous one. The last one of the day, and the reason why I was in the treatment room for hours, was the dacarbazine infusion. In young patients, this one is given very slowly and diluted with normal saline because it is a greater irritant of the veins than in older patients. I was in pain for most of this one, it felt like a tight band around my arm which stung me wherever my veins coursed, even though the nurses were very careful and slowed down the infusion rate every time. It helped to just close my eyes and listen to music, a playlist that I named ‘Chemotivation’ just for this purpose. It had very angry songs in it.
Side effects were quite random with me. After my first chemotherapy my neutrophil count dropped to 0.2, which is very low and essentially means that I was lacking a very important line of defense in my immune system. After my body failed to get its act together and produce more neutrophils, I had to have injections to stimulate my marrow three days before each chemo.
Cytotoxic drugs target rapidly dividing cells, which are your cancer cells, but also unfortunately your hair follicles and mucosal cells lining your GI tract. Consequently, three weeks after my first chemo I started losing hair everywhere. Not an inaccurate description, somewhere I read that it was like having an intravenous brazilian wax.
My oral mucosa got severely inflamed just three days after the first infusion (mucositis), and even moving my tongue inside my mouth or drinking water was excruciatingly painful — much worse than a regular oral ulcer. It was made better by lidocaine mouthwash, which I would have just before attempting to eat. But then again, my mucositis meant another victory for the peace-and-quiet team.
Although eating wasn’t much of a victory either. Especially towards the end of treatment, the thought of food made me retch and vomit. Below is a picture of a rare occasion when I could eat something after chemo, which we were so happy about that we had to immortalise.
Because of the steroids I was given, even though I didn’t eat much, I kept putting on weight around my waistline. Steroids also have a tendency to make you restless, so my sleep cycle was disrupted and I would lie awake at night for hours.
I spent most of my post-chemo days horizontally: lying in bed and just existing. Getting up would drain all my energy, and just keeping up with a conversation would be so difficult for me that many days I would just text my friends and rearrange for a different day to call. I am normally a very motivated person and have a great sense of discipline, but I admit that all I did for a long time was play videogames and sulk whenever my parents encouraged me to do anything else. I felt like the old Astrid had disappeared, and instead there was this version of her that had no drive to do anything and was content with just staring at a wall, letting time pass by.
All that being said, there were also good days. After a week had passed since each scheduled poisoning, I started feeling slightly better and managed to exercise a little bit. I tried to pick up new hobbies, as much as my energy levels would allow, and even though I was immunocompromised and I couldn’t see anyone face-to-face in this pandemic, I did take every chance to stay in touch with my friends and family remotely. On those good days, I would start to laugh again and go on walks with my parents, and read or focus on watching a series without getting distracted.
So it wasn’t all horrible. But I still believe that 10/10 people who have gone through chemotherapy wouldn’t recommend it to a friend.
During my treatment, I knew that my suffering had an end date. I knew that my doctors had a rough idea of when I would be discharged, and that there would come a time when I would get better and run again, smile again and make jokes again. As much as chemoterapy sucked, I knew that I would live to see better days, and that I would get to share them with my loved ones.
I also know that a lot of people don’t have that luck.
So, even though I was devastated to have cancer at a young age, I also know I was lucky enough to have a curable diagnosis and to be a citizen of a country with free healthcare. I was lucky to have a very strong support system to get me through the worst days and to celebrate the small wins. I was lucky to have everything I needed, and more.
Chemotherapy will forever be both one of the most traumatic experiences I have lived, and the greatest privilege I will ever have.
And it is one hangover I will never regret.