Even though I’ve been through this process twice before I’m still very nervous. Each treatment adds to the drugs already in my body and increases chances of side effects. This scares me.
I don’t get much sleep the night before and know its going to be a long slow countdown to 1.30pm.
First part of the process is to phone the Aseptics Pharmacy just before we leave to confirm we’re attending the appointment. This confirms they can make up the drugs needed for the treatment.
I turn up at 1.30 on the dot discover the lift is out of action so I have to take the stairs for one flight. Not much for a normal person but for me this is an effort. Puffing and breathing hard I get to reception and give them my appointment card. She ticks me off a list and tells me to go to room 2. So far so good.
Arrive in room 2, I can see 2 spare chairs so wonder which is mine. I introduce myself to one of the nurses in the room and she checks the list. Makes a concerned noise and checks the computer. She asks for my NHS number which I give her.
“I don’t have any appointment for you today, sorry”. I explain the date was written on my card and the receptionist has checked me off a list. So we go back to reception. I’m getting more anxious now and very warm.
No receptionist. My mind makes a leap, maybe she was an imposter 🤣 don’t be stupid. Nurse sees receptionist down the corridor outside a small office. As we approach its apparent they’re talking about me already.
I’m asked to take a seat in the corridor and everyone disappears into the office and I hear my name, date of birth mentioned a few times. I’m very conscious that people in the rooms already hooked up to IVs are staring, something interesting is happening.
It’s about 10 minutes before a different nurse approaches me, very apologetic. There’s been a mix up. My appointment had been moved, I thought she said to Monday. I panicked as I didn’t know if this would impact the treatment as dates and timings were important.
She said I could come back or the pharmacist had agreed to make up the meds today but there would be a 1-2 hour delay before they were ready. No brainier, I was there and I didn’t want another anxiety filled night and morning so I’d wait.
I was directed to a coffee area and waited. I also got hotter and hotter and the face mask I was wearing wasn’t helping at all
Time seems to pass really slowly but the nurse keeps coming back and updating me. Eventually, around 3pm she comes and gets me to go into room 4, chair 2.
Things happen with normal NHS speed and efficiency then and I’m quickly hooked up to the IV machine and the first saline drip is connected. After about 10 minutes this is removed and after a name and date of birth check, the first drug is connected, the nivolumab. Timer is set for 30 minutes, more waiting.
I start listening to some podcasts and try and relax and not think too much about what is going into my veins.
When the drip finishes an alarm goes off and I’m quickly attended to and swapped to another saline drip. The second drug isn’t here yet so we wait.
And wait.
Another 20 minutes pass and the ipilimumab arrives in a yellow bag from the pharmacy. Another name and DOB check and I’m hooked up. This is the really expensive (£30,000) and really toxic drug. This is the one that is stopped after 4 treatments. Another 30 minute timer.
By the time this one finishes, I’m the last patient left in the room so don’t feel guilty taking a selfie.
Another 10 minute saline drip and we’re done. I go and meet Katie who has just arrived to pick me up.
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