Ipilimumab / Nivolumab - 14th Jan 2022

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.  

Anonymous