I just finished crying when I took this photo and no amount of filters can hide my red nose. 😢
This morning I had my first Enhertu infusion at the private clinic. It was a lot different than being at the Cancer Centre. All the patients were in a small room together. The one good thing is that there was 1 nurse for every 1 patient. That’s a nurse-patient ratio that I can get onboard with. 😊 There was also a big window I could look out of with lots of natural light in the room.
When they started hooking me up, I started balling my eyes out. It wasn’t for long, but it just felt like there has been such a huge build-up to this day. So many unknowns, stress …and now side effects. At the moment, I feel woozy and tired. When I stand up, it’s worse. So I’m lying down. Severe effects can hit anywhere from now to 10 days after the infusion. So I won’t be leaving the house much. I have a CT scan at the smaller/closer hospital on Wednesday evening that my step Dad said he can drive me to.
I was emailed about a bone scan appointment next week at 7am at the hospital in the city. I’m not going to that. They can suck it. I tried calling back to reschedule but it’s like calling into the twilight zone where there’s dropped calls and no answering services. When I finally got a hold of someone, they put me through to the wrong place. It’s infuriating. I won’t be confirming online so they will hopefully, call me back to confirm and I can reschedule then (maybe). If I don’t hear anything in the next few days, I guess I’ll try to cancel via the health portal. (Unfortunately, there’s no option to reschedule that way.)
I had a discussion with my oncologist about bone scans, anyway. I told him they are a waste of an entire day for me and just cause anxiety. I’d say 90% of the time the results are always mixed and don’t line up with my tumour markers or CT scan. …or even how I feel. I hate them. I’ve had probably close to 25 — and that means nearly 25 wasted days of my life. They’ve never made a difference in my treatment decisions, either. If a fracture was suspected in my situation, they’d just send me for a CT or an Xray, anyway. Sometimes, we just have to make executive decisions about our own health and what makes sense for ourselves. This medical system often feels like a conveyer belt and I’ve been just an obedient rider of it. Going forward, I’ll only go if there’s a strong reason to and whether it could change the course of my treatment.
Side note: I do think it’s very important to be scanned regularly in the beginning of a metastatic disease diagnosis to figure out the behaviour of the cancer. So if you happen to read this post and are new to metastatic disease, please listen to your oncology team and scan when they deem appropriate.
Anyway, I’m feeling more and more tired and icky. I’m going to keep sipping some sparkling water and maybe eat another something bland and tiny. Then, I’ll search out some stand up comedy shows to watch.
