4th Chemo Cycle – 22nd June 2022
At the time of writing this – Mon 27th June – I am day 5 into the Cycle and confused about how days count (oh, Chemo brain). So, for the purpose of indulgence, I see day 1 as infusion day; the day I get my poison, so that makes today 6 in fact; yup, that sounds right.
The banality of how things count, probably alludes to how this blog post will go. It really has been uneventful thus far.
Last Wednesday came about just like any other Chemo-day. A fair amount of trepidation and anxiety leading up to it. The trepidation and anxiety comes from, I guess a stereotype that Chemo is nasty, unbearable, has terrible side-effects and is just a shitey thing to go through. At this point, I want to say that it could well be shitey and may well be more shitey for others than that which I am experiencing currently.
A précis of my 3 rounds thus far is: -
C1 – R-Maxi-CHOP – pretty shite
C2 – R-HiDAC – pretty shite but different
C3 – R-Maxi-CHOP – much less shite than C1, but still a challenge
C4 – R-HiDAC – this cycle
So, for some reason I was expecting this one to be worse. It’s not (so far).
We had breakfast, at home this time, and choofed on up the road to the wonderful staff at the North Sydney Cancer Centre – the centre for shite hair as I like to call it.
Upon being called, I am walked through to the treatment room. I get myself ready, which means sitting down with just ant-shirt on and my PowerLine lumens exposed. I get myself settled in and get given my pre-meds (anti-spew and paracetamol (I think)) along with a saline infusion. The Rituximab was then hooked up and off I went into some work email, watching what’s going on around the centre and generally trying to pass the time. As I understand it, Rituximab isn’t Chemo, it is an immunotherapy. I think the chemo in this round is the Cytarabine. I watched an older fella start to ‘have an issue’; me being me that means I nosed intently as he was attended to. His English was appalling, better than my Mandarin but certainly not very good English. This meant that everything was done through his companion interpreter as the nurses rushed around with professional expedience trying to alleviate his sudden onset back pain; allegedly a common side effect/ reaction to this brand of poison.
Around the same time, my infusion alarm went off, which I’ve learned by now meant that I was to be ‘turned up’ to the next speed of infusion. The increase in speed was swiftly administered. A few minutes later, I noticed a sudden flush and a heavy sweat on my head under my bunnet, my forehead and my chest. I started to fan myself and a Nurse looked at me as if ‘what the actual fuck’? She asked me and I just said I was a bit hot and didn’t want to disturb them. She was cross, ‘that’s what were here for, you have to tell us when you’re not ok’. I just thought I’d push through and be ok. One mental aspect of this is, I am not as adept at being able to ‘handle’ things as I’d like to have thought I would be. I need to keep reminding myself that this is strong stuff and me being in control is a bit of a daft idea. I think. I was monitored, turned down again, left to cool down and quite frankly, that’s about it, the rest of the infusion was uneventful. I’d had my first allergic reaction, it was dealt with, and it was all as innocuous as one could imagine.
Then my Cytarabine was connected to my Pump and given to me in a new, wee bag to carry. Off I choofed back to the Car and drove home.
On Thursday, I went back and had the next lot of Cytarabine connected and much the same, an uneventful night. I was disconnected on the Friday.
I’d say that all in all, the overarching side-effect from which I am affected is fatigue & tiredness; are they the same?
I feel overwhelming urge to rest sometimes and then because I am resting when my body tells me, I guess sometimes I am not physically tired enough in the evening/ night. So, the paradox of complete physical incapacity is melded in with periods of wide-awakedness during the night. I say to myself, at this stage, I’m just rolling with it and do what my body tells me. Kerry and I have been out for a couple of lunches, and it’s led me to the conclusion that, PERHAPS, if one let’s this thing rule, then it will?!?!?! Perhaps a ‘life goes on’ approach is preferable? Of course, that approach may not be available to all! I’m not sure an over-indulged approach to life is conducive but I also can’t stand the thought of just lying down to it and waiting for the Chemo Bogeymen to surface. It is what it fucking is, and I’ll deal with it as best I can, normality has to be something I strive for.
I recall Dr Greenwood saying that there are no studies that definitively prove that a positive attitude is helpful, but that it is very much thought that a negative attitude can allow this thing to take over. Aside from trying to handle my side-effects, which have been noticeable, I think this journey, so far, continues to be something that I will win!! I do want to note that; my journey is my journey. I don’t trivialise anyone else’s journey at all. The mental aspect is a real challenge for me. The uncertainty, that inability to plan, the lack of anything more than a sort-term view of the world…. it’s having a huge effect on me. I am scheduled to have a PET Scan on 11th July. I understand that PET Scan determines whether I stay on course for an Autologous Stem Cell Transplant (ASCT) or whether the course of treatment I am on needs to change. From the notes, I see that a reduction of 50% (or greater) in disease is a desirable outcome. I feel that my lumps and bumps have reduced markedly, so I am hopeful that we continue the trajectory I am on.
On a daily basis, I want to say FUCK CANCER, SCREW YOU!!! I am already tired of being a sick person and the aforementioned inability to plan and make commitments to things…. it’s a complete fucking ball-ache. As I sign this off……. I have made a booking for a Gig in about 5 weeks. I’ll be mid Cycle 5. Probably short-sighted, but instead of booking GA tickets, I’ve booked seated tickets at the back, in some sense of “that’ll be safer”. I am also prepared to forego the tickets if I feel shite on the night. I’ve seen the artist 3 times previously.
That said…. when it comes round, and I decide to go…….I’ll be fucking mad for it!!!!!!