Another month has rolled by, chocolate bunnies shared amongst family and friends, lots and lots of yummy Easter food devoured and the colder weather starting to make an appearance here in the land of Oz.
I of course left you at my last blog post with some juicy tidbits on my latest saga with cancer, surgery, sadistic nurses, stoma living and all of it served up with my signature dash of inspirational spice.
Well, it's time to update you all on this ol' gals journey!
Chemotherapy was on the cards this time around, (geez, I'm an expert on this cancer crap now, aren't I?) and I commenced treatment on the 29th March 2021.
I documented that first chemo experience with short videos and photos which I shared on IG and FB and even LinkedIn. I wanted to be able to look back on that day when my 6 months of chemo finishes, and celebrate that I finally got through it.
'Clarence' the little machine that would be my fortnightly companion for the next 6 months was introduced and I jokingly refer to him as a bit of a slut!
You know.....he comes and visits every 2 weeks, demands my attention 24/7, is a hog in the bed and doesn't give a flying f!@# how loud he is while Jony and I are trying to get some shut eye!
Clarence has this annoying habit of letting out this noise that sounds like, 'tssssstttttt' every 15 minutes! He is attached to me for a full 46 hours!! Ah the freaking joys!!
So whilst I was mentally preparing for my first session, I was also having to deal with the everyday pain associated with this last horrific surgery. The lower back pain is the worst. It is constant and does not let up. I still can't sit in an upright position for very long and car rides are the worse. I am very thankful for my posterior cushion that at least softens the impact of when I'm forced to sit.
Here is another downer from surgery that I actually haven't shared.......it's actually so bloody annoying and is still an issue; I've explained that they needed to remove a specific margin of tissue, organs and bones from around the cancerous tumour site. The Vajayjay was cut at the top and I was left with an opening the size of a 10 cent coin. This shouldn't even be a problem as I had 2 drains that were supposed to 'drain' out all post surgical accumulated fluid. However, my body was like, screw that! I see an opening and I'm going to send ALL fluid through that hole!
My surgery was on the 28th January, exactly 81 days ago and yep I've still got that situation happening down there! So unbelievably uncomfortable and so unbelievably unrelenting!
I knew that it would take time to heal but did not expect it to last past 8 weeks.I was cheerfully told by my surgeon that in fact it will not heal any time soon because of the chemo starting and to expect to suffer with it while chemo is happening. Great! 6 more months of this!
Chemo has a funny way of calling the shots and damn it's starting to already show who's boss.
So, I've caught you up on Clarence. I've explained that my Vajayjay is a little depressed right now and my butt is protesting all day, every day with the injustice of me sitting on it!
Time to explain about my particular Chemo regimen. I shall impart some medical terminology in this part of the program :)
My treatment is called FOLFOX6. The treatment cycle is repeated every 14 days and I am expected to have 12 cycles. A 6 month duration. The first three drugs which are administered via the picc line into my vein are called Oxaliplatin, Calcium folinate and Fluorouracil. This takes approx 4 hours to go through. Once this is finished, I am then connected up to 'Clarence' and he is hooked up to the drug also called Fluorouracil which slowly pumps into my vein through the picc line for the next 46 hours @ 2ml per hour.
I was given the 12 page list of possible side effects before starting on this epic marathon of anti cancer nukes, and yes some of them freaked me out but I chose to only focus on what I had control of.
One hour into my first round of chemo and my fingers were suddenly like ice. I had gotten out of my chair to stretch and use the bathroom, not expecting ANY side effect to kick in yet. I wash my hands, the water is cold and what feels like tiny electricity jolts start a merry little dance on my fingertips. It was insane! Pins and Needles but not really, it was the oddest sensation! I shook my hands to try and stop it and after a couple of minutes it started to settle down.
I remember walking back to my chair and the guy sitting across me must have been watching my shaking hands antics and commented;
Him: 'Is this your first treatment?'.
Me: 'Yes, what about you?'
Him: 'Second. How freaky is the cold tingle in the fingers?'
We went on to have a lengthy chat and he explained that it was the first side effect to show up but that by the second day after the treatment cycle had finished, it goes away.
I was relieved............(It was only his second round of chemo on that day, I wonder if that's still the case because it definitely isn't for me!)
And so I got through my first round of chemo with icy fingertips that could not touch anything cold. I could not get anything out of the fridge, could not wash my hands in cold water, could not touch door handles without whimpering from the sudden shock of electric pain and feeling like Elsa from Frozen. This lasted only for a further day after the first treatment cycle. I also could not drink anything cold. The nurses were emphatic about this side effect because of the possibility of your breathing being cut off by your throat closing up. Thank God I like room temperature beverages!
What else happened to me? ....I was met with an overwhelming wave of exhaustion that would suddenly just engulf me, I slept hours away in the afternoons and would still be tired by nighttime.
The nausea reared its ugly head the day after that first cycle finished and it was horrible. Nothing to do but keep popping the anti nausea pills.
All in all I felt victorious on getting through round 1 of chemo and did not feel that any of the side effects would last longer than about 5 days post completion. This really buoyed me up and to be honest I was quietly proud of how well I was coping.
Ding, ding, ding......Round 2.
Stepping back into the ring to go another round last week, on the 12th April I was feeling really good. I had already faced the fear and felt stronger and ready to rumble for round 2.
Exactly the same experience in regards to the icy fingertips one hour into treatment, this was expected now and I was ok about it. Hooked back up to Clarence and off home I went.
I started noticing that the 'Elsa' fingertips were much more pronounced this time around and I started to feel it in my toes too. The weather did cool down substantially last week and I definitely felt the iciness. My room temperature water was too cold and I had to warm up my mug in the microwave before filling it with filtered water.
Getting up in the middle of the night to empty Stella was no mean feat. My toes making contact with the tiled bathroom floor, 'Ouch!'. My hand on the door handle to get into the bathroom, 'Ouch!'. Waiting for the water to warm up to wash my hands.....'Arrgggggg!"
This particular side effect is very common with this type of chemotherapy and it's called Peripheral Neuropathy (Nerve Damage).
So many inconsequential things that no one would even think about, were suddenly at the forefront of everything I was doing.
I expected to have these sensations wear off by the end of the week, like they did the first time around. This is not the case unfortunately.
I am dismayed to say that this particular side effect is hanging around.
I realised something profound in the last couple of days. I recognised how manic I was on social media last week.
Why? I feel like I am running out of time. I think I felt the internal changes to my nerve endings and I simply wanted to have my best self out there before it's too late.
You all know that I am the last person to not appreciate all the magnificence in my life. I truly live my life with the autopilot set to grateful. I always can find and always do find the silver lining in every situation and I am happy with my life.
But.....this is really hard. I see all my memories popping up on FB when I wasn't the cancer woman. Im sitting on a sailboat in Mexico in my bikini, holding up a glass of bubbles. No bag attached to my tummy, no idea that I had a tsunami heading my way.
I do miss me.
I miss my independence. I miss my body without a stoma. I miss my life without fucking cancer being such a big part of it. I miss how strong and fit I used to be. I miss not worrying about what is to happen to me next.
This is the dark side of my journey and I usually acknowledge it silently and gently push it back to the shadows.
But this is also part of my story. Yes I am positive and most of the time I am upbeat but Cancer and Chemo are all consuming parts of my everyday life and they have hung around for such a long time now. I'm so over it.
I felt the pull to honestly and openly write about the shadow side of my journey.
Please don't tell me it could be worse. I am fighting with everything I have, but I am tired.
Please don't tell me to stay positive because most of the time I am. But I'm also human and I deserve to cry too.
Please don't tell me that we could all die at any moment and be hit by a bus. Because I was hit by a bus when I was told I had cancer!
Please just listen to me when I need to talk about what scares me and overwhelms me because I just need you to hear my pain and be there.
Signing off for now.....hug your loved ones tight beautiful people and appreciate how precious every moment is.
Light and Love