How chemo is

by | Nov 1, 2021

I don’t suppose there is a right way to react the first time a doctor uses the word chemotherapy, if there is I have not been read in. 

You can’t write about cancer without using some clichés. So, here’s one: nothing prepares you for hearing any of it. Hearing that it’s cancer, that it will have to be chemo and maybe a spot of radiation.  

I was calm and heard it matter-of-factly, unemotional. 

I have had a few months to deal with cancer number one threatening a comeback so when cancer number two showed up there wasn’t any freaking out left. I’d used it all up.  

The hand grabbing your guts, twisting and jerking wasn’t there this time round. Neither was the wind blowing an ice cloud through you, with cold splinters stabbing at the back of your neck. 

But it IS chemotherapy and I’d heard enough scattered bits to know that it’s not a good experience. That it is going to be a whole lot of unpleasant. But you can’t know how much bad will come your way, you can’t know how it will feel or what the experience would be. Everyone has a different story to tell, different reactions to it and variations in severity of its effects.

In Bracing for the tsunami, a pre chemo entry, I write how all I can do leading up to chemo is brace for it and let it hit. It’s good to look at things before they happen, not to speculate or try and predict, but to take a sober look without the benefit of hindsight and realise the futility of trying to control and master the unknown. 

I knew chemo would suck thorns, that it would be hard on my body. What I didn’t know was that it would also be very hard on my brain. Chemo brain is real and I got it bad. 

The chemotherapy event, the administering of the pre-meds and cytotoxic chemicals, is a long affair.  With blood cancers being done at hematology and not oncology you are admitted as a day patient, you don’t just get to sit in a Lazy-Boy. The drip is inserted and machine hooked up, ready for a very prompt 9 a.m. start. The nursing staff who do this are excellent; thorough, knowledgeable and clear with instructions and information. There is a caring gentleness which is very welcome and appreciated. 

Medical journeys that have high stakes and uneven odds take a mental toll; having the people you deal with treat you with kindness, understanding, and compassion is hugely meaningful and consequential to your wellness. In the last 18 months I have dealt with everything from exceptional, through indifferent, mediocre and downright dismal, as elaborated on in Of Doctors, Healers and medical Engineers. 

So, at 9 a.m. sharp the machine starts with pre-meds through the intravenous supply line. There is a lot of pre-meds. Antihistamine, which made me sleep through most of it, paracetamol (a whole bottle), anti-nausea meds, the list goes on. So many pre-meds that the actual chemo chemicals only start at around 1:30. The needle was pulled out at 3:27. 

First reaction to the chemicals is tiredness which turns to an exhaustion that makes you want to sleep for a long time. But you still feel physically acceptable. My brother and sister-in-law were part of the round one driving support team and fetched me from the hospital on chemo day one.  I suggested we get coffee which I’d been craving since mid-morning. I couldn’t even contemplate the instant chicory blend the nursing staff offered me from their kitchen.  We went to a nearby mall and got coffee to go. Arriving home a said good bye at the gate and went up to my apartment unaided even though they felt I should be supported up the stairs.

I showered, dressed and went to sit on the couch. Could still deal, just very tired. 

Then into the evening it starts, aches and pains showing up in every part of your body, joints hurt, your head hurts (a lot), you feel crampy and a general malaise descends in a weighty cloud. I don’t know if I am one of the lucky ones or if it’s the drip bag full of anti-nausea meds, but I’m spared the most dreaded of chemo side effects. Not even the slightest queasiness. That I’m very grateful for, I don’t know how I’d cope with full-blown heave, emit and expel return to sender on top of how utterly terrible I feel. 

The pharmacist who stopped by pre-discharge with my hamper of post chemo meds emphasised that I should take the morning and evening anti-nausea tablets as scheduled well into the next week to maintain the benefit of their effect. I am very obedient when it comes to someone with knowledge tells me what is good for me. Life is too full of challenges not to learn from other people’s mistakes. They have made them on our behalf like good stunt doubles and we should oblige, if not for their sacrifice, for our own benefit. 

So, having been spared the retch and spew routine I suppose it would be asking too much to also have a pass on the other side effects. The general malaise, or decidedly exaggerated malaise as it were, isn’t the worse part. Sure, there are also lots of aches and pains, unpredictable toilet routines (standard scheduling is suspended), dizziness for days, discomfort, headaches and the general hit-by-train sensation that can’t be downplayed, but that is just more illness and what you do during illness is to take it slow, rest and recover. 

But all of that is not the worst. No, the worst is what happens to your head. Chemo brain. 

This is a hard one to describe. It’s like there is a thick, impenetrable fog that you can’t shake, your brain does not want to engage, it tries in vain to structure thoughts, or remember things, or string sentences together. You forget words mid-sentence, you had them, they were in the production queue, bottles waiting to be filled but then it’s their turn and they get to the front and the stream has stopped. 

Thoughts have been redacted. A permanent marker smeared across words that are vital to a sentence making sense, and delivering its meaning.

You pick up your phone to do something, look for something and then just sit staring at it, what you were about to do has evaporated and you can only stare hoping that it would come back. But it doesn’t, it’s gone and you can’t resolve the most mundane thought string into action. So, your thinking is broken and you can’t focus and  you can’t concentrate. Your brain cannot perform these simple tasks. And you get frustrated. You want to shout to whoever you’re talking to because they are witness to your cognitive failures and it’s embarrassing, humiliating even. You as a together, autonomous, capable – accomplished perhaps – entity cannot be seen to be bumbling simple continuity of thought and speech.

The days following the treatment routine are worse, and better. The day after you head back to the hospital for an injections that boosts white blood cells, since they too are knocked out by the chemo drugs. As many injections as I’ve had, none have hurt like this, I can take pain but this is something else. The injection is in your belly and the nurse pinches the skin and drives the needle in. It’s a big-ish injection and it stays in for a bit, that sting is uncomfortable, but it’s the spreading, outward rippling  burn that marks the experience. And the pain stays long after the needle is withdrawn and you head home. 

Exhaustion, general pain and discomfort are all pervasively present in these post chemo days and the course is completed by the taking of 100 steroid tablets over five days, 20 per day. This affects the better and worse parts of the first week and your patience and tolerance are tested, things that wouldn’t bother you that much are direct sources of irritation and frustration.  Steroids do that, but their worst effect is how they make sleeping harder. The conundrum of being so exhausted from the chemo effects and yet unable to sleep, the strongest sleeping tablets I’ve taken so far doesn’t move the needle, you just stare into the darkness. Eventually, the all consuming exhaustion takes over and you sleep, fitfully and of no quality. And then you are awake again, anywhere from around four or five in the morning, and lying in bed begging for just a little more helps nothing. Relief doesn’t come, so you get up and start your day, try and work through the fog of chemo brain and exhaustion. What a cruel trick to play on you. 

Then you start getting your strength back and feel human again. You are constantly aware of the reality of chemo, it doesn’t leave you completely, but enough to cope and get things done. You just have to keep being gentle, the biggest drawback remains how quickly you run out of energy, how quickly you start huffing from even a short walk. But you build strength and get some vitality back, ready for the next time you enter the ward and lie down for the needle to go in, chemo is back.