And just like that we are half-way through this shit show of a year!! June is shaping up to be another extraordinary month and already has so far been epic. Big birthday's, Bowel Cancer awareness, infusions, tests and we know how the story goes.....
Welcome to June beautiful people! I saw a meme the other day on the socials about 'July- represented by aliens', getting ready to deliver the next installment of 'Earth has gone to shit!'....I had to giggle.
Anyway, last month I was mentally preparing to commence the Remicade infusions for my active Crohn's disease. Not to digress, but I had significant concerns relating to the cancer producing side effects!! My Gastro Specialist- Dr G was fantastic when I went and saw him.
We discussed my treatment plan for the rest of the year and I brought up all the stats that I had been researching regarding the Remicade/Infliximab infusions. I've got to hand it to him, his response back to my 'These meds cause rectal and colon cancer', was simply....'Well, good thing you don't have those body parts anymore!' Ummmmm, O.K. I mean he's not wrong.
Can I just say, this is only a tiny portion of a very in depth conversation. It made me laugh.....and my oh my I was so grateful for the laughter in that moment!
We spoke about cancer forming in any other part of the small bowel (in my case, what's left of my small bowel), and the risk is very low. Small Intestine cancer is quite rare but nevertheless I will continue to be scanned and prodded to check for any abnormalities.
So, I have agreed to re-commencing on the Remicade...(Infliximab is also what this drug is referred to).
25th May kicked off this Infusion journey and was also the day that I was booked in to see my Chemo doctor. Dr M is my chemo specialist and although the recommendation is to NOT start chemotherapy, I obviously need to be monitored with the likes of blood tests, CT scans, MRI's ...etc...
This appointment went well and we also have a plan for the rest of the year. Another milestone crossed off my medical list.
Now, back to infusion time. I first started on Remicade, back in 2012. Liverpool hospital was the place to be...well, in this context anyway! I knew this routine like the back of my hand. I was familiar with the great nurses, the chemist where I would pick up my liquid bag of goodies to be pumped into me, the favourite coffee shop and I usually got to sit in my favourite chair whilst I was hooked up with a needle in my arm vein delivering the immunosuppressants that gave me a much better quality of life.
Now, I'm in regional NSW, new doctor's, new hospital, new system and a vastly different functioning body. I was nervous....extremely so. I was annoyed at myself for feeling scared, especially after everything I have endured this year but I quickly mentally slapped myself a couple of times and assured myself that I was allowed to be scared. (The Gemini in me- keeps me company I tell ya!).
I am terrified of needles as you would all know, if you've read my previous posts, and for anyone that is new here.....Yes, I am shit scared of needles! This has not improved with time, not improved with all the injections I have had to have this year with my bouts in hospital.....It has gotten worse!!
The nurses in Liverpool hospital knew me well. They always used the smallest needle, I always had the most experienced of the lot to jab me because they understood how truly scared I was.
I was now in a new environment with new people and I hoped they were just as kind to me as my past experiences.
They were. Thank the lord! I was not made to feel stupid, the lovely nurse had a great chat with me and was really gentle. I was oh so grateful.
O.K, enough of the needle phobia... how was it I hear you ask? It went fine. I say fine because the reality is that whilst the infusion is being administered, you are seated, reading a book, listening to music, watching a movie, playing a game on your phone, whatever relaxes you; all the time there is a strong drug pumping into your blood stream and it knocks you about. Well it does for me in any case. It will take me a while again to build up my tolerance but so far (I've had 2 infusions now. Last one 2 days ago) it has left me exhausted for a solid 2 to 3 days. Both times, I have slept the day away when I've gotten home, then slept like a dead person at night and literally felt like my body was heavy with led. Another side effect, which I recall from when I started the drug 8 years ago was the immediate ravenous appetite! My appetite has definitely climbed a notch and I once again have a bit of a protruding belly! This sucks but I know when the routine is set back to 8 weekly infusions, this will calm down.
Oh the joys of being me!!
Throughout all this, I continue to work out as much as I physically can. I am getting stronger but at the moment need the rest just as much. My beautiful children have celebrated big birthday milestones. My gorgeous girl turning 18 on May 30th and my handsome son turning 21 on 8th June. My birthday is the day after my son's on the 9th June and I celebrated my 45th birthday. I made it to my next birthday! I'm still here! I did not believe that I would survive through to my 45th. Wow! Living each day and understanding how precious time truly is has probably been the best gift I could have ever received.
We are all on our own journeys, navigating the ups and downs that life gifts us with. No other person is doing a better job than you because we are ALL different and special in our own ways. What unites us is the care and kindness we should show each other, and the power you have inside of you to make every day count.
On that note my gorgeous peeps, I wish you a wonderful day.....I'm off to empty my bag, eat a salad (I really want a burger! Bloody meds!) and veg out.
Till next time....