I nearly punched my Oncologists’ registrar in the mouth on Wednesday, but luckily for him, I was too fatigued to do so. I’m not an advocate for violence, but when he flippantly suggests ‘exercise’ as a solution to my then current state of intense lethargy, it seemed pretty called for. Fatigue clearly breeds frustration.
Fatigue. A word used often, but a feeling most probably don’t actually often experience. I admit, I’ve used the term so many times in the past but have only just now begun to understand the real meaning of the word. It’s awful. It’s been exactly a week since I had my third round of chemo and it’s taken 7 days for me to emerge from the thick chemo fog that I’ve been suffocated by over this period.I’ve been thinking how the hell am I going to manage weekly treatments come February?
Mentally, it’s a constant battle as I’m wanting to make plans, enjoy the summer, the weather, the days, but for the past week my body just hasn’t let me. It has been betraying me. All it has yearned for is my Sealy Posturepedic and delicious linen bed sheets.
My initial frustration with the registrars suggestion that I try and go walking when I’m fatigued, was quickly replaced with joy when he then proceeded to tell me the fabulous news that my treatment plan has been changed, and more importantly reduced!! He said that I would have one less month of chemo, with longer intervals than originally suggested. One less month of feeling flat and fatigued.
The original plan was that from February my treatment involved 12 cycles every week. I was so concerned and full of dread trying to imagine how I’d cope with weekly sessions, especially coming off the back of a rough week. The idea of waking up on day 7 finally feeling normal and ‘alive’ to then have to head back to the infamous leather recliner at Royal North Shore to be hooked up to the toxic juice, wasn’t exactly tickling my fancy.
So as you can imagine when the registrar confirmed my weekly treatments were being reduced to fortnightly, I was so unbelievably relieved. It not only meant that I’d have more time between cycles but I’d also have less of them, hence meaning I would finish treatment around start of April instead of May. I questioned him about this as I had it all written down on paper from our first consultation. Despite Mum, Sean and I questioning him whether he had it correct, he was adamant that the oncologist had changed the plan due to finding out that I have the BRACA 1 gene mutation (but that’s a whole other story for another blog post) so we all walked out feeling like we’d finally been cut some slack.
I should have known better, and have kept the champagne on ice, or the San Pellagrino that is. My phone rang yesterday and it was the registrar who had his tail between his legs with the news that he had made a mistake. He was wrong. He had misinformed me of my treatment plan despite being questioned by myself, my Mum and my partner.
So Back to 12 cycles every week (blow 1). He also mentioned that due to the new combo chemo drugs my immune system will be especially low. To prevent this I’ll need a special injection different from the one I currently take. However unlike the injection I currently take, this one is not subsidized by medicare. Its about $2,000 per injection (blow 2). The registrar was so apologetic that he had forgotten to tell me, but he reassured me that the oncologist and team are trying to figure out how often I am going to require this. Hopefully not every week. I don’t need my iphone calculator to figure out how steep that could work out to be. I just laughed. I wasn’t actually surprised. When you’ve already hit rock bottom, news like this just seems part of the circus parade.
So now I’m back to being faced with the barbaric bastard that is the weekly cycles of chemo and it’s trusty sidekick, fatigue.