What it's like to have Chemotherapy
Updated: Jan 9
Hello friend, welcome back!
Not going to lie, I've attempted to write this 5 times now...and to be honest I just don't really know how to start, what to say, what not to say, how much detail is needed. So Im hoping we can get it right on the fifth go! Alright, Take 5...
Lets chat about Chemo and what it was like for me.
I had stage 4 Non-Hodgkin Lymphoma and was put on DA-EPOCH for 6 rounds. DA stands for 'dose adjusted' which meant they could change the levels and watch how much my body could handle. The first 3 doses were turned up a level each time as my body was recovering considerably well at those doses. The last 3 rounds were at the highest level and I stayed there till I was done with treatment.
EPOCH is the components of the therapy which are Etoposide, Prednisone, Vincristine, Cyclophosphamide, Doxorubicin and Rituximab. Along with other medications to help with side effects but this was my chemo regime. I would take home my little chemo bag filled with orange...slush and have it running through me for 4 days non stop (96 hours). I had a PICC line put in and the Chemo bag was connected to my PICC line which was a tube that ran into a main artery and into my blood stream.
After the 4 days I would have 15 days rest/recovery and then back on it. I did this 6 times. What was it like? Well....lets just say I thought it would be worse. You see it in the movies in its most dramatic setting, I was so scared because that was my only knowledge of what chemotherapy looked like for everyone. The first round was fine, I had worse hangovers than that 🤫. They then turned up the dose and it would get harder and harder but still manageable and I was able to live a pretty comfortable life all things considered. I was living on my own (by choice), still cooking for myself, cleaning, doing nice activities, driving around, going for small walks, seeing friends and family. I was eating everything in sight and had a huge appetite!
I only really started to feel it once they put me on the highest dose and kept me there for 3 rounds. Also, the longer you're on chemo the more tired you'll get, especially if you're receiving high doses with the intention to cure. I found it harder the recover each time towards the end. My worst round was number 5...I remember sitting on my couch and I had been staring at the wall for over 25mins. I completely zoned out, staring into thin air for 25+ mins, like I had lost my last two marbles! I felt like Frankenstein. I was lucky to have only started feeling like this towards the end and only had to endure 2 really difficult rounds (Again, still not as bad as you see in the movies). My chemo treatment was mainly a challenge mentally. It's hard to explain. Don't get me wrong, I did feel physical pain (bone and muscle pain, tissue pain where the tumour was, sensitive skin, daily injections to bring up my blood counts, headaches, stomach and mouth ulcers etc). But what really took a toll on me was feeling mentally and emotionally exhausted. Sometimes I couldn't speak to anyone for a day or 2 because I was too tired to think. I could barely string a sentence together and it took so much energy and effort to do that. Keep in mind, those days were only the 4 days on chemo and the 5-7 days following. After that my energy picked up again.
Chemo will test you mentally, physically and emotionally. Its different for everyone but I've got to say my initial expectation of chemo was 10x worse than what I actually went though. My advice is to go in with no expectations on how you'll react. Take it day by day ALWAYS. And honestly, just grab the bull by the horns, hold tight and give it your everything. Even if you fall off, jump right back on and keep going. It's a hell of a ride so take whatever you can from it. I became so in-tuned with my body on a cellular level it was truly mind blowing, I look back now and I am so amazed at what my mind and body is capable of - I've seen my body at its most fragile state yet it still stood up every single day and put on its old, rusty, beaten up armour ready for another day in the battlefield.
It takes so much strength..and a lot of people always say to me "I could have never done what you did" and I always say to them "of course you could! you find strength you never knew you had." and its 100% true. You can absolutely do this and so many people do...its not impossible. Its hard but our bodies are so incredible and a true work of art!
I will write a follow up post with my tips on going through chemo and what I found helped me through it all. But for now I hope this has made chemo a little less scary than what they show on the movies.
See you in my next post