So today I started treatment again. And I think the frustrating disorganization of the UK healthcare system is starting to rub off on me [insert brain exploding emoji here!]
So, in Amsterdam, today’s treatment would’ve gone something like this:
Boxy rocks up, says “Hi” to the Dutchie on reception, takes a seat for a few minutes, before a clog-clad Radiologist pops their head around the door and says “all set Rebecca?” I’d then head into a changing room, dump my bag and walk through into the radiation room, hop up on the bed and lie still for a few minutes while they line me up to the lines they drew on me last week, a quick zap, and I’m all done. Hop off the bed, head out through the changing room, grab my bag, a quick “Doei!” to Max in passing and I’m off.
The process was so easy; no unnecessary extras, in and out in minutes, and a bit of bouncy banter along the way. The Dutchies used to comment that I was always full of beans and they looked forward to seeing me. At the time, I thought nothing of this, as they made it so easy for me that my mood just reflected that. But having now experienced the process over here? I get why patients complain, why the NHS is inefficient, why the staff are frustrated and why the system is so broken.
In comparison, today’s equivalent in the UK left dad taking the brunt of a full-on rant when I finally emerged after three hours, and me practically drinking my fast action opioid like it was gin straight from the bottle!
I started trying to write this down in the car in the way back. But even with the option to edit, rephrase, add/change/delete, it was still too disorganized for even me to make sense of it! So bear with me if this is somewhat jumbled (and avoid the gin bottle if you can!)
So what happened?
The treatment I’m having comprises four radiation section (zaps) on my back and one on my hip. I had a CT ‘sit’ scan last week (to line me up on the scanner and draw on the marks so they can align me in the same spot each time). I then had to read a multi-page ‘consent’ form, to confirm I knew the side effects (all of them, absolutely all of them, like the detail you get on those information leaflets in medicine boxes, which nearly always include ‘sudden death’, and that people never actually read…) before signing the consent form.
AN: Bear in mind, this is all in English, yet it was so complicated and badly written that having a pre-treatment brief verbally from a Dutch medic felt easier.
At that point (last week) there was still some question over whether we could radiate my back again (I’ve had so much already, there may be too much overlap with my previous treatment). So I consented to treat my hip (as I’ve only had one zap there before) and agreed I’d sign the consent for my back today before starting treatment.
Yesterday, I got a call to say that, before zapping my hip, they wanted to do an X-ray to check the risk of fracture before zapping it again.
AN: Bear in mind, by this point I’ve already signed the hip consent form.
As my oncologist is on holiday this week, I was asked to get a hip X-ray and see her on Monday, and they’ll decide from there. OK, when is the X-ray, do I need to make an appointment? “No, just come at your convenience, before I see you on Monday.” Ok, what time am I seeing you on Monday? “We’ll confirm that when you come in on Friday.” Right. So if I find out on Friday (at my 4:30 appointment) that I’m seeing you first thing Monday, you won’t have an X-ray, so really I need to do it before my zap on Friday, right? “It’s up to you, just come at your convenience, on level -2 in the hospital.”
Clear as mud.
So today, I went to the hospital at 2:30, thinking two hours should be plenty, even if I have to wait a while and made my way down to radiology.
On arrival, I was told “ah yes, you’re here for radiation.” Yes, but I need a hip X-ray first, so I’ve come a bit early in case you don’t have a slot free straight away.
At this point, all seemed fine, until I was told “You first needed a sit scan to mark up your back…” hang on, I did that last week, and have the tattoos to prove it! “Oh, well then you need to sign a consent form for your radiation…” I did that last week too, and you gave me a lovely pink carbon copy, which I was told to bring with me today? “Oh I don’t need to see that” #useful
AN: Starting to feel a bit irate, and taking a deep(ish – with only 3/4 of my lungs now functioning properly) breath, I tried to recap/summarize.
I’m here to have a hip X-ray, sometime before 4:10 today, at which time I’ll then have a 20-minute consultation to sign a consent form to radiate my back, followed by my first of four radiations at 4:30.
The reply? You guessed it: “That’s not what our system says…” 😫 “…let me go and ask someone… take a seat…”
Eventually, the nurse who’d done my sit scan last week appeared. If the look on her face didn’t say it all, her words were enough. “I know, don’t worry, I’ve sorted it. Pop upstairs to level 0, they know you’re coming, I’ve sent them your paperwork and they’ll do your X-ray now. Then come back down here and we’ll get your consent form sorted for your back and get you straight into radiation.”
I’ve no idea how many cups of tea dad consumed in the three hour all this was going on, but the drive home was ‘fun’ and he clearly wasn’t on decaf!
To top it all off; when I got home I received a letter from my psychologist (or as I refer to her, my ‘crazy cancer quack’). Said letter started with the line “Following our meeting on 11th August…” (26 days ago) followed by the references “Dictated 20th August” and “Typed 25th August”
The letter was four lines long.
So if anyone is wondering how treatment went today; aside from the fact that I managed to wear odd sneakers, I’m not sure what hurts more – the pain, or the prospect of a further four visits next week?