I never believed in the 'one size fits all' approach to anything, and chemotherapy was certainly not different.
What we see in TV adverts and movies is NOT the bigger picture.
There are so many people living and thriving despite their cancer diagnosis. Yes, that is true! Regardless of the 'stages', we can go about our lives 'un-noticed'.
We can 'look really well', much to people's dismay when they see us.
Although we may not feel well and energised all the time (but who does anyway?), we can lead really good lives!
I listed the medical side effects in my previous post, but what I did not know was that I was going to find my own list along the path, the symptoms that did not make it to the road map...
My personal ones were the following (I use the word personal because I never met another CCA fellow traveller I could compare notes with).
Whilst on treatment, physically I looked and felt as follows:
🐡 Yellow, hashy and even red puffy faced
🐌 Slow: both in movement and thought processing
🐳 Swollen all over from liquid retention leaving me with heavy puffed up legs and a weird walking stance
🔥 Burning hot flushes from chemo menopause
🌫 Foggy: both in vision and brain
🙈 Gritty eyes
💧 Nasal drips
🔥 Burning sensations in the lining of the nose and eosophagus causing me to sneeze, cough and have a hoarsy voice
And yet... despite all the above... mentally, spiritually and emotionally I could feel incredible! (The steroids often helped to keep me 'pumped' for a couple of days 😅 🤙)
In fact, the crazy part is that I had some amazing ideas and insights during or immediately post treatment, like starting this blog for example 🤔 🤷🏻♀️
I have been able to make fun and laugh out loud at the state I found myself in and often compared it with other things:
• Chemo Hulk - when the steroids kicked in, they really got to work! It felt like everything I touched, I did so with extra strength... you would know when I slamed a door shut 😅
• Chemo comedy - is seemed that a few hours post treatment I turned into a comedian and somehow came up with all sorts of jokes 🤷🏻♀️
• Chemo singer:
'Don't you know pump it up... the steroids pump you up!' - This was my version of the song going round in my head at 'rave o'clock' (wide awake in the middle of the night 🙈)
'Drop it like it's hot' - I always ended up with shaky hands and dropped a lot of the stuff I touched 🤷🏻♀️
• Chemo waterfalls - what happened post treatment diuretics 💦 😅
• Chemo 'urge to purge' - I don't know if it was because my body needed to flush out the toxins or the fact that when the 'chemo crash' happened, I could hardly take care of myself. I seemed to gain a new perspective on material items and the 'inventory' of what I own. It was almost like something got triggered in my brain and I just wanted to get rid of stuff... if an item of clothing did not feel right it went straight in the 'charity shop bag'. I have never been neither completely 'minimalist' or 'maximalist', I like to think of myself being a 'midimalist' but I sure am closer to the former these days!
One thing I even added into my routine was the 'chemo fashion' 👗
Having spoken to other people, I know some opt to wear their worst clothes during treatment since it is a rubbish event. I totally get it! However, somehow, I ended up doing the opposite and turned a somewhat unpleasant experience into something moderately nice. It was bad enough looking like a grey whale so I always made sure I looked 'nice'.
I wore loose comfy dresses with matching shawls and earrings.
At one point it even turned into friendly banter with a nurse who said she only came to see me to check out my outfits and would 'tell me off' if the matching accessories were not the perfect shade 😅
Choosing to wear 'pretty' clothes also gave me a focus, it stimulated my creativity as I put together the items I would wear.
Now...don't get me wrong...it was not all roses! Remember reading the words 'quemo crash' above? That's right, that is exactly what happened to me between day 4 and 6 post treatment.
These were not funny...at all! Quite the opposite, the 'crash' turned me into a completely different person... and the hardest part was that I was aware of it but could not change it or stop it.
Those days looked like the following:
• I got terribly irritable with everything and everyone
• I often ended up with a lot of bone pain from the injections I had to take to stimulate the bone barrow to produce white blood cells
• I always had pains all over my body, it was a weird pain, almost like something happened underneath my skin. Every area of the body I touched hurt, even the tip of the nose... very odd!
• I was in and out of what I called a 'sleep coma' and really could not do much
The worst days ended up being on Tuesdays (rodeo 1) and Mondays (rodeo 2 & 3) so I named them 'Turmoil Tuesdays' and 'Moody Mondays'.
As my perspective changed I renamed them to 'Me time Mondays'.
These days were completely blocked off the calendar. My loved ones all knew that they were the days to 'stay away from Sara' 😅
As bad as these days were, they brought a lot of lessons with them:
• I learnt to do absolutely nothing
• I learnt to take baby steps, be gentle and kind to myself. It was ok to just rest in silence
• Occasionally I would have the strength to have a bath. That is right... what is ordinarily a relaxing experience it felt more like a chore. But if I managed to do it, it felt really nice and offered some pain relief for a while
• I learnt to prepare for the 'crash' by ensuring I had everything I needed and leaving some meals ready the day prior
So, despite all the twists and turns, I managed to find my way around the chemo path.
I have now reached the end of the Gem-Cis lane and I am about to embark on a new voyage.
There are a few things one does not want to hear with this treatment. 'You cannot have it because the white blood or platelets count is too low' and most certainly not 'chemo resistance'. I really did not want to reach this point along the way, specially after becoming a pro at dealing with all the above but, so it is my trajectory on this planet! 🤷🏻♀️
I shall keep you posted with my new findings and adventures along the new path...
Sara 💙
"You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it."
Maya Angelou
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