Nausea#

I think nausea is one of the worst symptoms of chemotherapy in general. From the very beginning, my doctors placed great emphasis on it. They kept telling me to take my Metoclopramid at the slightest hint of nausea, and it was always the first thing they asked me about during our meetings. When I started, I only suffered from nausea caused by the treatment itself. During the very first infusion, it was the worst — it was probably a huge shock to my body, and perhaps I didn’t fully listen to the advice about taking the pills early enough. Although I was completely fine on the first day, most likely thanks to the stimulation from Dexamethasone steroids, the nausea hit me with full force on the second day. I remember not sleeping the whole night, just pacing between my bed and the toilet. I felt sicker than ever before, and it didn’t help at all that no matter how hard I tried, I couldn’t vomit anything. I spent most of the time on the bathroom floor in tears and helplessness; I’d never felt worse regarding nausea. But the positive thing is that as soon as I survived this phase, I immediately reported it to the doctor, and for the next cycle, she prescribed stronger anti-nausea medication and also increased my steroid dose, which helped immensely in bringing the nausea down to a manageable level. I haven’t experienced such a terrible night since.

However, from about halfway through the treatment, another form of nausea began to appear — doctors call it anticipatory nausea, meaning nausea triggered psychologically even before the infusion, just by thoughts of what awaits me. It started slowly, at first, I just felt uneasy at the thought of the red Doxorubicin, the cannula with the tube, the hospital environment, or the boxed lunch from the bistro that my partner and I always went to on infusion day. The further I progress in treatment, however, the worse this nausea gets. A few weeks ago, it was so bad that I asked my doctor for advice on how to handle it. She recommended anti-anxiety medication, specifically Valium, though again under some other commercial name that I unfortunately don’t remember. So far, I’ve had two infusions with this pill, and I’m not sure if it’s fully working. We’ll likely need to figure out the correct dosage, but I believe we’ll eventually sort it out.

My nausea usually lasts a few days, with the worst being on the infusion day and the day after. After that, the symptoms start to lessen, leaving just a feeling that my stomach is queasy, which usually lasts for a week. I also have trouble drinking fluids in general and a frequent urge to burp, which I’ve never been good at, so that’s also very unpleasant. But nothing compares to that first chemo dose, so I’m grateful that we’ve now caught most of the problems, and it’s no longer an unbearable hell.

Fatigue and weakness#

Another side effect that really knocked me out at first was relentless fatigue. I’d say that since the beginning of treatment, even on my best days, I’ve been operating at best at 80% of my pre-chemotherapy energy levels. This type of fatigue is completely different from ordinary tiredness after physical activity, it’s both mental and physical, and there’s no escaping it. The first dose was again the worst for me, I spent about five days in bed then, half-asleep, absolutely unable to climb the stairs to the kitchen and prepare food for myself. I’m grateful to my partner for taking care of me during that time and bringing me food and drinks, even though I usually couldn’t eat everything. The weakness was also terrible, I wasn’t able to go for my first walk, which lasted barely 30 minutes, until after a week, and it was at a snail’s pace, I couldn’t manage more.

Now, though, it’s also better. I’m still very weak and tired for about the first five days, but it’s not as omnipresent, and I don’t feel as helpless. For the first few days, I can even sleep for more than 12 hours a day, but I see that as a positive — it allows my body enough time to regenerate and also shortens the worst days. I’m writing this post on the third and fourth day after my last infusion, and I’m just grateful that I’m able to do something productive. While I haven’t left the house in four days, just the ability to get out of bed, move to the couch, and try to write something is huge progress from where I started. And after about five days, or at worst a week, I’m usable again and able to go for walks, hikes, or visit friends. It’s not exactly some epic fun, but at least I don’t have to sit at home for six months.

Reduced Immunity#

Another type of cell that takes a real beating from chemo is the immune system itself. Even a small cold, which a normal healthy person can usually deal with in a few days, can now mean a week-long hospitalization for me. Before each infusion, doctors repeat that as soon as I register a fever above 38°C, I must immediately come to the hospital. From my own experience, I know it can be hard for a healthy person to understand how dangerous this can be for me. Once, due to such a misunderstanding, I ended up hospitalized on an IV, which could have been completely avoidable with greater understanding from the other side. However, I’d like to discuss my hospitalizations in another post. For now, it’s probably enough to mention that I have to take my safety very seriously, for example, by wearing a mask in crowded places, on public transport, and also by regularly washing my hands and frequently using disinfectant. I try to be really careful, and I’d be happy if I could get through the rest of the treatment without a third hospitalization.

Sweating#

Night sweats, besides the lump in my neck, were actually the only symptom caused by the lymphoma itself even before treatment began. I’ve mentioned it before, but it was incredibly surreal to start chemotherapy, which is supposed to cure me, but practically caused me so many different problems I didn’t even know could happen. However, even after the lymphoma retreated under the bombardment of chemotherapy, I haven’t completely gotten rid of the sweating.

Another source that caused it was Bleomycin. Due to its effect on the lungs, it commonly causes fevers and general flu-like symptoms in the body. Before each ABVD infusion, I had to take Paracetamol to reduce the fever in advance. But it wasn’t 100% successful, so as long as I had this substance as part of my treatment, night sweats continued to haunt me.

However, even though I’ve switched to the AVD regimen, I still haven’t found peace from sweating. The last culprit is Zoladex and the artificial menopause it induces. Sweating is probably one of the most unpleasant side effects of this injection for me, as it’s not just at night, but random hot flashes annoy me during the day too, making me sweat like crazy with no escape. Doctors assured me it’s a perfectly textbook symptom that I don’t need to worry about, but it’s really hard to manage. And at night, it’s still the worst — sometimes I have to put extra layers of towels on my sheets and pillow so I don’t sleep in a puddle. Fortunately, with my last infusion, I received the final dose of this medication, so from next month, all of this should start to improve.

Hair, body hair, eyebrows, eyelashes#

Even before I started treatment, quite naively, I wasn’t afraid of nausea, fatigue, or the overall destruction of my body, but primarily of losing my hair. I’d always placed great emphasis on it; I loved it and believed it was my most distinctive physical feature. So, when it started falling out approximately two weeks after the start of treatment, I was very sad. However, I decided not to let cancer gradually pluck away my beloved hair, so at the first signs, I went to the hairdresser and had my head shaved down to a buzz cut. I cried throughout the entire process, and when we finished, I donated all 55 centimeters we cut off to charity.

But I was soon surprised by how quickly I got used to my new look. The buzz cut didn’t last long, though, my hair started falling out more and more, and for about a week, I spent my time in the shower just running my hands over my head and getting rid of the remaining strands. In the end, I was left with about 5% of my original volume, but it’s interesting that these little surviving hairs are still growing. However, they are thin and look more like fuzz. I feel like Gollum with them, so my partner shaves them off with a razor approximately every two weeks, and then I’m finally properly bald, as is fitting for a cancer patient.

But hair isn’t the only thing chemo affects this way. I soon noticed the loss of body hair all over, which I relatively like, as I haven’t had to shave once since starting treatment. What disappointed me more, though, are my eyebrows and eyelashes. After four months, perhaps only a quarter of my eyebrows remain (and those are very light and hard to see), and I’ve preferred to stop using mascara altogether to let my few poor remaining lashes live in peace.

In the end, however, I have to say that this is one of the smallest problems, I would even say it was a positive experience and a chance for some kind of personal development. The inability to use mascara forced me to lean more into other parts of makeup, and I dare say my eyeliner skills have significantly improved. Without this involuntary turn of events, I probably would never have pushed myself to experiment with my hair to such a drastic extent either. And my absolute favorite discovery is wigs. At first, I wanted to get a high-quality (and very expensive) blonde human hair wig, which Norwegians undergoing chemotherapy get for free, but ultimately, I wasn’t able to get the donation for it. Instead, I tried buying a colorful (of course, purple) wig with bangs from AliExpress for a few hundred Czech Crowns (so cheap!), and I was shocked by how good it looked. I think it helped that I’d been coloring my real hair all sorts of unnatural colors since high school. I soon bought other cheap colorful wigs, and they’ve become probably my favorite part of this whole process. Changing my hair color every day depending on my mood was always my dream, and even though I didn’t expect this particular way for it to come true, it brings me so much joy every time.

Muscle and back pain#

There’s probably not much to be surprised about here. After an infusion, you’re always tired and generally broken, which practically means you barely move for several days. That’s never good for muscles, so often for several days after an infusion and time spent sitting on the couch, my muscles would ache, especially in my legs and shoulders. I think Magnesium, which my doctors approved as a harmless and very helpful supplement, significantly helped me combat this. My back isn’t at its best either, I spend most of the first days in all sorts of twisted positions, and after a few days, I’m pretty beat up from it. Once, I even had an unpleasant shooting pain in my lower back that made my whole body twitch, and I had to take Paracetamol just to sleep for several nights.

However, exercise proved to be the solution. The simplest option is walks; moving your legs is crucial for alleviating muscle pain. Here in Trondheim, we also have a pleasant mini-gym specifically for cancer patients, so you don’t have to worry about infections there. As soon as I went there and did a back and leg workout, all the pain, including that unpleasant stinging one, disappeared within a few days. So, if you want to stay free of muscle pain even during cancer, unfortunately, you can’t avoid exercise, at least in my experience.

Joint pain#

This is a bit worse. It took a few doses before my joints started hurting enough to be a problem, but it eventually caught up to me too. My shoulders, hips, and knees hurt the most. When I discussed it with a physiotherapist, he advised me that exercise might also help, but it’s not a foolproof solution because joint pain is, unfortunately, a fairly known effect of chemo, making it harder to manage. I’m slowly getting used to my knees hurting when I walk and my hips hurting essentially all the time, but it’s really not the end of the world. And I also believe that after completing the treatment, it might mostly return to normal.

Vein and forearm pain#

As I mentioned when describing Dacarbazine, vein damage during infusion is one of the common painful experiences. There are ways to avoid it; patients often have a Port or PICC line inserted. Simply put, a PICC line is a long, thin tube inserted into a vein in the arm, which runs through the whole vein and ends close to the heart. A Port, on the other hand, is a small box surgically implanted under the skin on the chest, and a needle is simply inserted into it for each infusion. However, it’s essentially an open wound that the patient has to care for for six months. Both options are more comfortable and safer ways to administer chemotherapy because they protect the superficial and more sensitive veins.

However, I ultimately decided to go with a classic cannula because my doctor recommended it considering my type of lymphoma and treatment regimen, and I didn’t want to have a permanent tube or box in me for six months. During the infusion, it’s pretty random whether it will hurt or not. Dexamethasone, diluting the substance in a larger proportion of saline, and also the heating pad that nurses give me every time should help, but often it really hurts.

And unfortunately, it doesn’t end with the infusion. My forearm hurts for several days afterward, and sometimes it even persists into the second week. I never knew what it felt like for veins to hurt before, so that could also be considered an interesting experience. It’s not pleasant, several times, I couldn’t sleep at night without Paracetamol because of it, but luckily, it doesn’t happen that often, and it’s quite easy to endure.

Bone pain#

This is also a fairly specific situation caused by another special injection. Due to reduced immunity, the risk of infection is very high, and that’s why this injection, which promotes the production of white blood cells in the bone marrow, exists. While this is very useful for protection against viral and bacterial infections, unfortunately, it carries another set of side effects. The first is a really strange bone pain. It feels like being completely bruised; even a light touch on the pelvis, ribs, or cervical spine hurts a lot, which is also something I’d never experienced before. Besides the bones, it’s also quite evident that the fact that the bone marrow is working at peak efficiency really exhausts you. Fortunately, I’ve only had this injection twice so far, but each time I was all achy and utterly exhausted from it, so I had trouble just getting off the couch even a week after the infusion. I hope that for the last two months, I’ll manage to avoid further infections and, along with that, these immunity injections.

Mouth sores, tongue, and jaw pain#

These pains bothered me the most at the beginning of treatment. It’s crazy how much such a small thing can ruin your day, mouth sores completely prevented me from eating for several days. They weren’t like common canker sores, they were all over my mouth and incredibly painful. Soon, tongue pain joined them, and eventually even jaw and tooth pain, which became so unpleasant that I had to take Paracetamol again just to be able to fall asleep.

However, after the first unpleasant experience, I started researching it, and I read on Reddit that it’s possible to prevent Doxorubicin (which causes this) from affecting the jaw by sucking on or chewing ice during the infusion. Of course, I consulted my doctor beforehand to see if it was okay to avoid the drug’s effect in a specific area like that, and she approved it without issues. So, since then, mouth sores haven’t bothered me as much, and the week after infusion is immediately more pleasant. However, I’ve developed a psychological aversion to ice, now I really have to force myself to put it in my mouth during infusion without throwing up. But that’s a sacrifice I’m willing to make; a week without eating is a much worse option.

Loss of appetite#

Another thing worth mentioning is the loss of appetite. Usually, it’s just a temporary thing, at least for me. It’s mainly linked to the nausea, which I’ve managed to cut down to just a few days with medication. So, during those days, I eat minimally, but I have no problem catching up during the rest of the cycle. I’m lucky that I’m able to maintain my weight and hopefully supply my body with enough nutrients to be able to repair itself after each battle with chemo.

Digestive issues#

Digestion takes a big hit, primarily with diarrhea and constipation, which nicely complement each other throughout the cycle. The first is usually a minor issue, only on the day of the infusion itself, apparently as a reaction to the unpleasant substances in the chemical cocktail. The latter is worse, it usually kicks in as a reaction to the anti-nausea pills. I won’t go into details, but it can be quite painful. Luckily, syrups and medications help me with this, so I’m able to anticipate it and prevent it (mostly) in time.

Change in sense of smell (and taste too)#

The last effect I’d like to mention is how much chemo can change a person’s perception of smells and tastes. I wasn’t sure whether to put it here under digestion or below under psychological effects, but I think it fits better here. Right from the start of treatment, various smells suddenly began to bother me. Whether it was the soap in our bathroom, a juice I used to enjoy drinking, or even food my partner and I used to love cooking together. Suddenly, it all started to become disgusting and only triggered more and more nausea in me. It took me a while to realize what was actually happening. Chemo can easily mess with sensory perception, and unfortunately, there’s not much you can do about it. It’s hard to understand, and especially hard to explain to other people who haven’t been through it and can’t imagine how it’s possible that things I once liked now suddenly bother me so much. It was one of the most surprising side effects for me.

Neuropathy and tingling in the limbs#

Neuropathy, in other words, is the loss of sensation in the peripheries (primarily fingers), which is usually a permanent effect — it doesn’t fix itself after the treatment’s completion and often stays with a person for life. With more intense chemotherapies, this is a very high risk, where patients can completely lose sensation in entire finger segments on both hands and feet, making it easy to get burned or not even notice, for example, if they cut themselves. Fortunately, my regimen doesn’t pose such a risk. The only thing I’ve noticed is that my thumbs are slightly less sensitive, but it’s nothing terrible. Fine motor skills training is supposedly helpful for this, so I’m actually fighting it by playing games on a controller, practicing guitar, and also writing this blog on the keyboard.

Once or twice, my hands and feet also started tingling out of nowhere. This was quite scary, I was very afraid it would stay like that, but after consulting my doctor, she assured me it’s common and I shouldn’t be alarmed. It only lasted a few days in the end and hasn’t returned since, so I’ll trust it was just a one-off thing.

Insomnia#

I struggle with insomnia at least one night per cycle. Honestly, I’m not entirely sure if it’s a chemical effect of chemotherapy on the brain, or simply stress, anxiety, or similar psychological issues that any other trauma of this caliber would cause. Often, I also can’t sleep because my brain is running a hundred miles an hour. Sometimes, instead of sleeping, I think about what to write next for this blog, for example. So, while insomnia isn’t pleasant, it has led to many decent ideas for past and future posts.

Effects on the brain (loss of attention, memory, thinking)#

But there are other symptoms that are definitely caused by chemotherapy’s effect on the brain, generally called “chemo brain”. For me, this primarily means the three symptoms listed above. Problems with maintaining attention, short-term and long-term memory, and analytical thinking in general didn’t particularly bother me before in life, so when I finally realized what a huge problem chemo brain truly is, I was quite devastated.

About a month after starting treatment (after two infusions), I had exams for four local Norwegian subjects. At first, I was convinced I had no chance of passing. However, I eventually found out that cancer is a truly foolproof excuse for arranging individual exam dates and simpler forms of exams. I arranged the dates to be during my “good” weeks and as late as possible after an infusion, ideally giving me enough time to study. It was much harder than studying for exams with my old, more-or-less functional brain, but in the end, I managed to finish them all, which I consider a great life achievement.

After the exams, I started avoiding most technical activities altogether. I’m now focusing more on creative things like playing guitar, drawing, or writing, which are currently easier for me and have given me a new way to feel like I’m still doing something productive with my life. If all goes according to plan, after treatment ends, I’ll have approximately a month to get my poor brain back in shape, and then I’ll have to dive into my last year of studies. So, I hope chemo brain won’t be permanent in my case.

Apathy and depression#

Despite all the support from friends and family, and despite the activities I try to do to keep myself from going crazy, a certain degree of depression seems inevitable. This is another thing I hadn’t had much experience with before, and the transition from a healthy and optimistic mind to a chemically altered and often hopeless mind was truly difficult for me. I don’t want to dwell too much on this depressive part of the treatment, but I think it’s understandable that just the trauma of all these changes, which one can do nothing about, has left its mark on me. And it really doesn’t help that it’s all intensified by chemical and even chronic states of uncertainty and hopelessness.

I remember many days when I couldn’t force myself to do anything, and everything was dark and hopeless. I owe it to my partner that I got through these terrible days. Now I’ve learned that I just have to survive this, and in a few days, I’m able to function normally again and see joy and hope for the rest of the treatment and, most importantly, for life after it. But it’s still not easy.

Strange sensations with heartbeat and breathing#

At the beginning of treatment, and occasionally even now, before falling asleep, I hear my heart and lungs more distinctly than I’m used to. It’s something I’d describe as a murmur or a tremor — when I lie still with no other sensations to focus on, it’s a really strange thing I can’t quite explain. According to the doctors, it should be fine, so I’ll trust them.

Rash#

Another interesting thing is that a small, harmless rash always appears on my sides, arms, and legs a few days before each new infusion. I can’t explain what it is, my most creative theory is that it’s some form of withdrawal symptom. I don’t think it’s withdrawal from chemo itself, but perhaps it’s more about my body asking for steroids or anti-nausea medication. A few days after the next chemo dose (and with it, Dexamethasone and Metoclopramid), the rash disappears again. It’s a mystery.

Inability to focus my eyes#

Along with the fatigue and shock from the first chemo dose, I also experienced not being able to focus my eyes at all for a few days. I’ve worn glasses for distance vision for several years, but this had never happened to me before. However, it hasn’t recurred since the first infusion, so I think it really was just my body fighting the poison on all fronts and having no energy left for focusing, which at that time had a very low priority. Now I just see it as a curiosity.