And so we have a plan at least to monitor and keep watch of any of the dreaded cancer f@#kers making an appearance again this year.....and now the attention is how to get my 25 year old companion 'Crohn's' under control again.......Urggghhhh....here we go!
Now I will kick off with saying that I am not going backwards in terms of feeling pretty positive, because on the whole I am growing stronger everyday. I will also like to state for the record ladies and gentlemen that this does not mean that I don't have days where I literally have to force myself out of bed and stagger to the lounge, it just means that on those days I honour and respect the message from my body to simply rest and be kind to myself. This is what a Crohn's attack does to thyself! Ah, good times.
This month of May brings with it lots of fun medical appointments and tests and I'm getting used to this bombardment of prodding, x-raying, injecting and the thousand question merry go round. I get it, I accept it and it's fine......most of the time....
Here's the thing though, this month I also re-commence my treatment for Crohn's called 'Infliximab or Remicade'. This is where I spend hours in the hospital receiving this type of medication intravenously. I've mentioned in a previous blog and shared my history with meds I used to take for many years to keep the symptoms of Crohn's disease at bay suddenly caused an adverse affect on me. I couldn't tolerate the drugs anymore and was exhibiting all the horrible side effects (the ones you read on the side of the box but rarely experience!).... Vomiting, fainting, kidney malfunctioning etc... Remicade was recommended by my amazing gastro specialist back in 2012. I immediately experienced an uplift in my quality of life. Before this treatment I would drink a glass of water and would be running to the toilet and bleeding from my bum. It was exhausting! I suffered for years and years with this disease being at it's worst.....So, for me, Remicade was a life saver and I was very grateful to be on it.
Fast forward about 4 years later and I did notice that the potency of this drug was wearing thin for me. I was in hospital every 8 weeks like clockwork and the fatigue would start to creep up the last week before I was due for my next instalment which was O.K, I could absolutely handle this. However the last couple of years, the fatigue was constant, I wasn't getting the endorsement of what felt like a power surge (you know how normal everyday people feel most of the time) and I was struggling, as I've shared previously. I know that the cancer was present in my body for more than a year. The doc stated that the f@#ker had made camp in my butt about 18 months ago. Here's the thing.....one of the most perilous effects of taking Remicade is that it is an immunosuppressant drug. It affects your immune system and decreases your body's ability to fight infections by different bacteria, viruses etc. So whilst I had these asshole cancer cells in my system, I was taking a drug that reduced my body's response to fight them! Pretty shit, right? Hence the extreme exhaustion that I couldn't explain. I have been off this drug since the diagnosis in late November and have spent this year battling through two major surgeries and bowel obstructions.
Back to today......I am now healed enough to re-commence Remicade once again in a couple of weeks. We have all been in self isolation for a couple of months and It's allowed me to heal and not come into contact with anyone that may have Covid-19. What is running through my head right now is this treatment will start with an infusion at a 2 week mark, then a 4 week mark, a 6 week mark until finally I am back at 8 weekly intervals; all whilst we have a global pandemic roaming the earth!! The irony is insane. My immune system will be shot to shit, restrictions are starting to lift and I am terrified!!
Can I be terrified and still positive at the same time? Sure I can- let me go and put something red on :)
So, that's the next hurdle coming my way and here's the other big thing that is on repeat (especially in the wee early hours of the morning....3am!)
'Remicade can increase the risk of certain cancers......eg. colon and rectal cancer'.! It's in black and white and only something I discovered on this merry journey I'm on. And so whilst reading these fun facts, I also uncover that the longer you are on this drug, the higher the chances of getting cancer!
What the Actual F@#k!!
Hmmmm, I will be discussing all this with my Gastro specialist next week, but I'm shook...Am I a walking advertisement for 'Cancer Waiting to Happen'
So many thoughts and worries that run through my head at the 'Witching hour'.. (fun fact... For centuries 3am has been known as 'The Witching Hour' or 'Midnight of the Soul'....the window between midnight and sunrise!... just thought I'd share this little tidbit)
Anyways, didn't want to bum anyone out but this is how I'm feeling and well it's my blog and I'm sharing it all!
O.K, let me switch it up a little, I am an expert of diverting the terror takeover as I call it, and here is how Covid has affected me.
I went into lockdown and so did the world. It's been a personal and global battle and little by little I've grown stronger and witnessed countless acts of strength, courage and kindness around the globe. It's provided me with the sense of being part of a wider community of connectedness. I've had the chance to not jump on the crazy hamster wheel of life, that we were all a part of. Insane work schedules, rushing about, constant exhaustion, bustling and not having enough time to do everything in a day. We've all been forced to stop, slow down and take stock of our lives. What an absolute blessing.
So many have lost their lives to this pandemic and my heart as I'm sure most of our hearts are sad for all the loss of lives.
Watching all the families around the world using technology to stay connected...older, set in their ways folk who forced themselves to learn how to make use of computers and smart phones so they can see their loved ones. It's brought me so much joy to see this! The stoic, brave messages of hope..singing on balconies, chalk drawings on footpaths for young children to be excited about (adults too, no age discrimination here!) Heartwarming!
This precious gift of time to heal and connect with a community of fellow ostomates, crohnie's and cancer warriors all around the world who share their fighting spirit and positivity has helped me feel not so alone.
Yep, an abundance of blessings to take stock of and it allows the terror induced thoughts to quieten down. Told you, I'm an expert of steering the ship to calmer waters!
Yesterday was Mother's Day and to all the mums and step mums out there, I hope you all had a beautiful day! You are all amazing....
Until next time gorgeous peeps....