I have been looking forward to treatment day 1 for so long. I can't wait to get these drugs inside me.
I am fortunate my treatment hospital is 10 mins drive from my house. After deliberating whether to drive or get dropped off, we decide to play it safe and I get dropped off. It’s my first time so I am sent for an ECG with a green slip stating the rationale “chemo”. I politely point out to the nurse specialist that it’s not chemo, but immunotherapy. “Yes, yes” he acknowledges “. . . but chemo is simpler and more widely understood” LOL. Chemo has been around for a lot longer so I appreciate his point.
On return I am shown to the treatment room which has six chairs. I’m relieved it’s not as horrible and miserable as the day unit, seeing as I’m going to be a frequent visitor in the years ahead. I start to learn the protocol that I am to become very familiar with. They wheel in a wheelchair contraption for me. I get ready with my “I can walk! I am not ill” protests when the penny drops and I realise it might be scales. It is. They have a valid justification to weigh me, to calculate the drug dosage, so on I hop!
A nurse surveys my veins and it takes a couple of attempts to get the canula in. I’m hooked up to a bag of something, but it’s not my drugs. A flush of sodium chloride. I don’t really appreciate what’s going on. All the others look like seasoned campaigners. My first drug arrives. It’s always the nivolumab first. It’s hooked up, the infusion started and I don’t realise until the nurse specialist shows me the screen on the machine, with the flow rate and time remaining. I like this information – data I can follow progress on!
I watch the goings-on in the room. People are chatting between themselves. People are really relaxed, eating lunch and drinking tea. There’s lots of beeping from machines as they emit a warning, or a completion signal. It's all very calm and relaxed.
I did some research before hand on how long I was likely to be here. I am not a film fan but 3 hours is too long to read so I have bought a laptop and headphones to watch a film. Today it’s “The boy in the striped pyjamas” – an easy-to-watch film. This film watching strategy worked well for me, apart from cycle 4 when the film was too long for my session or I started it too late, and I had to watch the last 20 mins at home.
I didn’t really understand how the drug infusion would work. When my oncologist registrar told me I got the two drugs together I thought that meant they were mixed together and infused as one. Don't laugh!! That's not the case. It’s the nivo first (30mins), sometimes a flush to get the last remnants into my body (yes please), a wait of 30 mins, followed by the ipi (30 mins) and possibly a final flush. I never felt a thing. I did feel hungry after the drugs started and I wondered if this was the drugs starting to have a positive impact.
A couple of people get up and wander off to the toilet with their infusion pole in tow. I am definitely NOT doing that and resist my body when it signals it needs to pee.
The Pharmacist came to see me with drugs for any side effects. I worry how I am going to remember it all. I get issued with a pile of leaflets and a glossy “my cancer treatment” A5 brochure. I’m really not sure about the brochure. Perhaps they need to offer a phone app. Finally the nurse specialist tells me about the escalation phone lines and the red alerts. I paid very close attention to this bit. I feel I've got phone numbers for the whole Scottish NHS - this number for treatment logistics, this one for emergencies, this one for health questions but feeling well blah blah blah. . . . . . . and that's before my oncology numbers.
At last all the beeping is over. All the drugs are in, the canula is taken out and I can finally go to the toilet, and phone for my lift home. I've had worse visits to the dentist so I will be driving myself next time. Back to do it all again in 3 weeks time.
