chemo /// the side effects

Everyone reacts to chemo differently. There were side effects I was warned about that didn't emerge whatsoever (e.g mouth sores), and others that seemed to be worse in my case (e.g. hand & foot syndrome). So my experiences as described are anecdotal only. What's important for those who do have to go through chemotherapy, is to keep the oncology team fully apprised of all body changes and side effects developments throughout the program, as they can be serious and with long-term impact even if seemingly innocuous at the time.

FATIGUE & BRAIN FOG

As mentioned in the prior post ad nauseum, fatigue and brain fog were a prominent feature of chemo, especially during or after the chemotherapy infusions. I've described this side effect as rendering me a zombie, which I think is a pretty accurate description. No energy, no brain capacity or concentration, it felt a bit like wandering aimlessly through a haze much of the time. Even watching TV wasn't really possible, I would just zone out. Another feeling I've likened it to is the state you might have found yourself in after a multi-day music festival, a big bender, or just generally where you've partied too much and a one day hangover isn't sufficient to recover. It doesn't feel like the first day of a bad hangover - I didn't have a throbbing headache or a craving for greasy food or anything. It's like the second day - the Monday morning after, but a factor more intense - the feeling of being completely "fried".

REDUCED FITNESS

I definitely noticed significantly reduced fitness levels and sometimes reduced lung capacity, for e.g. when going up stairs or when I felt well enough to exercise. I completed satisfactory lung function tests each week at the hospital, but there was definitely a noticeable drop here. Hopefully my lungs heal-up long-term, as this can be one of the lasting effects.

You could hear this effect also in my voicebox. My wife often commented that I sounded like an old man, as I sounded pretty wheezy and couldn't speak very loud during the lower points of the cycles.

NAUSEA / APPETITE / WEIGHT LOSS

This one was mixed actually. I definitely had bouts of nausea, and a few times made my way hurriedly to the bathroom thinking I might puke. But I never actually made it past dry heaving, and the nausea was never too extreme. I definitely did feel sick thinking about certain foods (which changed day-by-day), and had cravings for others (also changing all the time). It seemed to me I might be pregnant!

Thankfully, I rarely lost my appetite. Part of this may have been to do with my diet regiment (see the chemo "lifestyle changes" post), but whatever it was I'm grateful I kept an appetite and therefore the weight loss I experienced wasn't too extreme. On my final day of the chemo program I clocked in at 69.6 kg, down just over 3 kg from 73.0 kg on Day 1, 9 weeks earlier.

HAIR LOSS

Being a diva about my hair, I was hopeful that I might be one of those chemo patients who didn't lose it. In my overoptimistic head, this dream started looking like it may come to fruition after 2 weeks into the program when my locks were as full as ever. But, towards the back end of the third week, my scalp started to burn and feel sensitive, and sure enough hair started to turn up in the bottom of the shower and on my pillow. It started off as a few hairs here and there, but after a couple of days turned into almost constant painful clumps falling out, and it became clear that a shave was the only way forward. My barber was kind enough to meet me on a Sunday afternoon and the rest is history.

While the resulting look wasn't as bad as I had originally thought, it wasn't helped by the fact that I still had big patches where the hair wasn't fully falling out - basically big patches of 5 o'clock shadow on the top of my dome. A few more weeks (and a few close shaves with a razor later) though, and I was as shiny as Mr. Clean. I am very grateful that my eyebrows and eyelashes stayed in place, though thinned out noticeably by the end. Otherwise, apart from some arm and leg hair, I was a like one of those Egyptian hairless cats!

RINGING IN EARS (TINNITUS)

This is a common side effect, and can be a bit of an annoying one. While not constant, often I'd hear a high frequency ringing in my ear, randomly and seemingly for no reason. Nothing painful, just irritating. Thankfully, this one seems to have subsided soon after finishing the chemo program.

HAND AND FOOT SYNDROME Not as common but one that I was warned about and which has been one of the most persistent and bothersome for me has been hand and foot syndrome "HFS"). Early on in treatment I started to feel a tingling in the tips of my fingers. Over time, this turned into swelling, pain, dryness / calluses, and what I imagine arthritis might feel like. Soreness and an inability to do "intricate" things like unlock doors, open jars, etc. without meaningful pain. There was some pain in the bottom of my feet as well, but not as dramatic as my hands.

The nurses tested the nerve responses in my hands when the symptoms first emerged and they were in a good enough state to continue the chemotherapy program unaltered, but it's definitely been a source of consistent discomfort. Sometimes I would wake up at night and my hands felt so swollen and painful it was tough to fall back to sleep. While the HFS has subsided somewhat since finishing chemo, it's far from gone and I understand from internet research it's a symptom that can take months to really disappear (or can be a long-term effect). One sad result of this side effect - I haven't been able to wear my wedding ring on my ring finger for weeks!

RISK OF INFECTION As mentioned in the prior post, risk of infection goes way up during chemotherapy as white blood cell generation is suppressed. Thankfully, I never got sick or infected during the program.

SKIN CHANGES

My skin never dried out significantly, though this is a common side effect. However, I did develop a weird purplish brown patch on both of my big toes - almost like a bruise that wouldn't go away. As of the time of writing, weeks after finishing chemo - it still hasn't gone.

OTHER SHORT TERM SIDE EFFECTS There are many other potential short term side effects, all of which I managed to avoid. I won't list them here as I can't speak to them, but I'll post a link to a more fulsome list in the resources section.

LONG-TERM SIDE EFFECTS

Having only just finished chemo, it's too early for me to report back on long-term effects. Of course, I have some worries about the ones I've been warned about most heavily - the effect on my lungs and the potential long-term effect on my fertility. But as Montaigne said, "there were many terrible things in my life and most of them never happened.” As with the rest of this journey, I'm trying to take the journey day by day, bit by bit, and not go through all the scenarios of what might play out in the future.