The realities of chemo. Uncensored and uncut.
Quite a few people asked me while on chemo “what is it like? What is it REALLY like?”.
All they seemed to know of, was the nausea and head hair loss, but were genuinely interested as to what else I was experiencing. My response to this question usually was, “indescribably awful”. But it got me thinking. I just figured that no one wants to hear the horror stories of cancer, or how hard it is, we all want the happy-endings and to know it’s all okay. But the amount of people approaching me, who really wanted that dose of reality got me thinking that perhaps I was wrong. Maybe more of us than I originally thought want the other side of it all too, the un-fluffy, uncensored, harsh reality. So …. This is an honest summary of my chemo experience.
When referring to chemotherapy, the words are commonly said “chemo doesn’t discriminate”. It is a perfect explanation that chemo does not pick and choose, it just toxifies everything. In an over-simple description; Cancer cells divide and grow very quickly. Chemotherapy is a toxin that attacks fast multiplying/dividing/growing cells in your body. So, chemotherapy does just that, it kills the fast growing cancer cells in your body…. But here’s where it isn’t fun. Chemo does not know the difference between a fast growing cancer cell, or a fast growing any-other-type of cell. It does not discriminate, it just kills any fast dividing cell - whatever its purpose. As an example, this is why hair loss is such a common symptom, because hair follicles are very fast multiplying cells (hair grows really quickly, right?), so the chemo attacks them. But hair follicle’s are not the only type of cell that has a fast division/growth rate in our body, a reason why on chemotherapy, people can feel unwell all-over, and side-effects can be so varied.
My regime: 6 months of chemotherapy in total. The first 3 months was the chemo abbreviated as ‘AC’, and appropriately nicknamed ‘the red devil’ or as my oncologist called it ‘the real shit chemo’. The last 3 months of chemo, I switched onto Paclitaxel chemo on a weekly basis, which my oncologist referred to as ‘the less-shit-chemo’. I had 4 rounds of AC chemo every 3 weeks, totalling 12 weeks (the first 3 months of chemo). Still with me? The second, weekly chemo, was for 12 rounds, totalling the second three months. Either way, it’s a long, loooong time.
I was that person that was very, very sick from chemo. I was the horror-story patient. On the ‘sick from chemo scale’ I’ve just created of zero-to-hero, I was 0.5. This is an important moment to quote the chemo mantra “chemo affects everyone differently”. It is true, it is different for everyone and there is no way to predict its impacts. There are, I know, some people out there who barely feel symptoms from chemo. These mythical creatures may perhaps experience some fatigue and hair loss, but still be able to continue to work and do simple daily tasks. If you are out there oh majestical chemo-unicorn, I salute you! I am so glad to know that not everyone would experience what I did. It really is, different for everyone and completely unpredictable.
After my first IV of the ‘red-devil’ I went home, high as a kite on steroids (to mask the initial symptoms), vague, exhausted, but wired and with this awful chemical-metallic taste in my mouth. I crossed my fingers, hoped for the best and just waited to see what side-effects would unfold. The first round was okay, I was sick, nauseous and mouth ulcers started to appear, but with the medication I got through that first week. Day 13 after round 1, my hair started to come out in the shower. I gave a gasp and then realised it was to be expected (I just hadn’t realised so soon!). The next day in the shower my pubic hair started coming out. Knowing that hair follicles grow quickly (yes, even pubic hair follicles), it made sense to me, I just hadn’t been informed of that one! Around the hair loss and illness that first round, I thought I could handle it. It was pretty awful, but I thought to myself “if this is it? I can do this… I can do this”.
After the second round of ‘the red-devil’, my symptoms really started to kick in. Not only did I have every side effect on the list of ‘possible side effects’ (except I didn’t vomit - my nausea was constant, but I never vomited), I had to be a unique, special chemo snowflake and create new side-effects that my treating team in 20 years had never seen before.
It is the case for many on chemo, after the first week in the cycle, you might start to feel a bit human again. So at the point when most people start to improve slightly, I got worse. I got headaches, really bad ones. I got headaches that lasted for 8-9 days and occasionally they would wander into migraine territory, commonly at 4am, and would last days before going back into ‘really bad headache’ territory. It was debilitating and all I could do was quietly weep to myself throughout the nights and days. Light hurt, movement hurt, breathing hurt and I was so grumpy, the thought of anyone in the world laughing or smiling made me want to throat-punch the universe. In the third week of the chemo cycle, the headaches would start to subside and the full body, stinging & itchy skin rash would kick-in. Clothing, sitting, sleeping was all very challenging. That and the constant other symptoms had me unwell for the entire 3 week cycles with no reprieve.
My ‘other’ symptoms were; mouth ulcers and bleeding gums to the point where I did not want to eat at times. Labia ulcers, stomach pain and ulcers including reflux. Constipation, and from that, haemorrhoids for the first 3 months. For the last 3 months of chemo I had chronic diarrhoea, and from that, more haemorrhoids. Ridiculously enough, during the 3 months of chronic diarrhoea, I also had constant sneezing fits…. Diarrhoea and sneezing. Lets just say it was tense times! I had consistent insomnia from pain, anxiety, frequent toileting, plus the headaches and hot-flushes throughout the night from induced menopause. I also had chronic fatigue. Fatigue so intense at times I was unable to get up to go to the toilet. Discoloured, brown, shearing toenails and fingernails that were so sensitive when starting to fall off, it hurt to get dressed, pick up items and wear shoes. Peripheral neuropathy (tingling, numbness and pain starting at your toes and fingers) kicked in and at times I completely lost my sense of taste and smell. The migraines, the never-ending nausea, the full body stinging rashes, the swollen eyes. Hair loss (head, pubic, armpit, eyebrows, eyelashes ) to the point where I looked like a boiled potato. My appetite tripled and I became an eating machine. Then there was my impairments from surgery, but I think I'll just focus on the chemo so we're finished before next year.
Each time the chemo was pumped into my body and I was able to go home, on the way out the chemo-ward door, a nurse would call out to me, “call us if you experience anything unusual”......... I was bewildered and would think to myself..."in what universe is any of it usual?".
Chemo had become my world and symptom management, my new way of living.
So, I set goals for myself. I needed the sense of accomplishment, I needed the purpose and I needed the control, in what was such a helpless situation.
My daily goals were:
1) Take all of the pills I needed to take, throughout the day (exhausting)
2) Complete the list of Self-care tasks (temperature checks, creams, ointments, rinsing mouth ulcers, shower… it goes on).
3) Walk for a certain amount of time per day, to get my heart rate up.
The chemo I was on severely impacts cardiac function later in life, so I stuck to a very gentle exercise regime prescribed by my exercise physiologist. This regime gave me a thread of control over my health, so I held to it. Even on those bad headache days, I did my best, I walked, I felt like I had some control.
I felt like my entire being was under attack and felt poisoned to my core. But not attacked only physically, but also sexually (but that’s a topic for later!) and mentally.
The worst symptom in my opinion, yes, possibly worse than the 9 day migraines, was the ‘chemo-brain’. And one that people had not really heard of. Chemo brain is common and is referenced as a 'cognitive dysfunction' among health professionals. It is real, and it is not JUST forgetfulness. I have spoken with people during chemo, and most of them have told me that the thing they struggled with the most, was/is the chemo-brain, and I couldn’t agree more.
Chemo-brain was described to me as ‘forgetfulness and vagueness’. This is an introduction yes, but had not prepared me at all for how impaired I would be. Yes, my memory was greatly impacted. I would forget what I was saying mid-sentence and not remember the theme of the conversation, and at times forget where I was. It was scary, being lost in places I have been to every day. I was tangential and off-topic in conversation, blurting out words that made no sense at all. I had no attention span, I would stop and forget why I had walked into a room or what I was doing while I was doing it. I could not read more than one sentence in a book or listen to more than 30 seconds of a podcast. It once took me 2 hours to listen to the first 8 minutes of a podcast as I continually had to rewind and try again. Keys locked out of my apartment, wallet left at home, not taking medications on time or not remembering if I had taken them. It was constant. Luckily as an OT, I implemented strategies to assist with my memory and lack of attention, which I have used with patients in cognitive rehabilitation post stroke. It helped, but didn’t alleviate how frustrating it was. Even more so because I was watching it happen.
I was watching the decline in my thought processes. I felt like I was losing who I was, my being, my sense of self, and the person left behind was someone I couldn't stand to be around. I described it to a friend like this;
Imagine you are in an empty movie cinema. On the screen they’re showing a movie, and it’s your life in real time. You’re watching you. Your interactions, your conversations, your day to day tasks, and it’s all in the ‘point-of-view’, view on the screen. Here’s the hard part. You are sitting there, watching you forget, interrupt people, say rude or nonsensical things, get lost in supermarkets or on the same route you walk daily, having no sense of reason or logic, being unable to make decisions or follow what is happening around you. And all the while, you are just watching this unfold on the big-screen in frustration, in front of you. You are standing on chairs, screaming and shaking your fists at the screen in anger, and no matter how much you yell, nothing changes. The behaviours just get worse and you just get more frustrated and anxious. You can’t stand the character in this film, and you know it’s you. You just have to keep on watching and keep on getting more and more frustrated at yourself.
Needless to say, I struggled.
My mental health suffered. I developed anxiety from the steroids, chemo-brain and stress. My self-esteem plummeted and I was diagnosed with mild-depression. I was debilitated and unwell to a level I never thought possible. I missed work, I missed my patients and role in rehabilitation and I felt like I was stagnating. And alongside this, I was also grieving. I was grieving the loss of living, of my sexuality and my social connections. I was grieving the loss of seeing my friends, having fun and being fun, seeing live music or even having the energy to cook myself a nice meal, or geez, even just crack a joke.More importantly, I was grieving the loss of myself, who I used to be, and was struggling with who I had become. And all through this? Was that damn chemical, toxic, metallic-chemo taste in my mouth.
Again, this sounds like a horror story, and it is. But it is my horror story and will not be the case for others. Remember, we all respond differently to chemo, and that list of side-effects is just a list of possible side effects. I truly hope you are a majestical chemo-unicorn (I know you’re out there!) or someone you know who is having/about to have chemo turns out to be one.
So, if you’ve read this far, you have an insight to one persons chemo-reality and maybe know a little more about possible symptoms. I’m glad people asked me to describe it in detail, no-fluff. It helped me validate what I was experiencing, rather than hiding it. I also understand how confronting it can be and why some people don’t want to know, or are scared to ask. I understand.
If you are going through chemo, or know someone who is, it can be ugly, awful and vulnerable. But, there have been positive outcomes from this also. The care & kindness of strangers overwhelmed me with gratitude, and it also showed me the amazing people I have in my life. I have built and re-built stronger connections and relationships, and this experience has also shown me how lucky I am. So, in the spirit of softening the blow, there can be a silver-lining, even for someone at 0.5 on the zero-to-hero ‘sick-from-chemo-scale’.
This is the point where I end with thank you’s. Thank you to my global empire of friends and family who supported me. Thank you to my carer/partner who was there for me, but gave me the space I needed while still providing a sense of support. Also, thank you for the daily gentle gym dates and shoulder to cry on. Thank you for my friend who would take me for walks (physically drag me for walks) when I was unable to get off the couch, and my naturopath friend for the amazing recommendations to ease symptoms. Thank you, my dear, dear friend who organised a meal drive between friends, would come over for tea in the afternoon, hold my hand and tell me about our social circles which kept me connected to the outside world (and you). Thank you Captain Jean Luc Picard of the starship USS Enterprise-D and Captain Kathryn Janeway of the starship USS Voyager, for the distraction and company. And thank you frozen cokes for consistently being an instant nausea relief.
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