When I was maybe 16, we spent New Year’s Eve in Napier, New Zealand. A lot of my family are Kiwis so it was the place we went for all our holidays, visiting them all. It’s a pretty nice place, which has been good to me over the years and I’ve had many amazing adventures in and around the area.
Anyway, that year, as the clock struck twelve and we stood on the promenade by the beach in front of the Sound Shell on Marine Parade, fireworks erupted over our heads as Stairway to Heaven blasted out over us all. Everyone was silent as we watched the colours raining down over our heads. I remember a feeling of peace and connection and it’s a memory, a scene that’s never left me and one I can call on at will and be transported back there to that moment. Iconic.
I chose ‘Rubber Soul’ by The Beatles as my music for my first zappy zappy sesh. It was playing quietly as I went into the room and they pottered about getting things ready. I got in place in the machine and they put my mask on and clipped me in. I tried to stay calm. I did stay calm. When they left the room to start zapping, I asked if they could turn the music up and they cranked it. I smiled. Yeah baby, you most certainly can drive my car. (a lil Beatles reference there for anyone who got it, a very strange thing to write for anyone uninitiated). For some reason, I was reminded of that New Year’s Eve. The lights were off in the zappy room and as The Beatles sang at me I thought perhaps I could be anywhere. Clarence bopped along with me.
Transport on the first day went so smoothly. They booked it in, texted me a time to pick me up half an hr before my appointment the car turned up, then dropped me off at UCLH. Brilliant. What an incredible service, I sat in the car on the way in feeling so grateful that this is available to me. But while I was in for my first day, they remembered this thing they’re obsessed with telling me regularly – that I might drop dead at any minute. So they cancelled my lovely car service that keeps me in the loop by texting me a time, and picks me up just when I need it so I’m on time… apparently I must be in an ambulance of some sort.
I was also given a shouty piece of paper with a big red border that I have to physically carry with me to every zappy session, which says if I do drop dead, they shouldn’t try to resuscitate me. That piece of paper I had forced upon me if I wanted to get my treatment. I have to get this piece of paper out and hand it to the radiographers every time I get zapped. Then they hand it back to me after. Surely there must be a better way than this… Handing over a piece of paper about my death each day? Really? Heaven forbid if I accidentally lose it…
So day two starts with my doorbell ringing at 7:30am.
I stumbled down to the front door in my pyjamas, still half asleep, my pain meds not kicked in yet, and a man was standing there saying ‘hi, your hospital transport is here…’
‘Mine?’ I said, confused.
‘Yes, are you Jen?’
‘Yes. Why… Are you here now?’
‘What time is your appointment?’
‘1:15…? They’ve got you down for transport at 7:30am.’
‘Well I’m um…not ready… because my appointment is in like 5 and a half hours…’
He apologised and left and I went back inside to make a coffee and then jump on Zoom and spend an hour writing with 300 other people around the world, as I do most week days.
But I had a funny feeling that it wouldn’t be the end of it… I had a sinking feeling it was going to mean issues when I actually needed my patient transport hours later. That they wouldn’t turn up at the time I actually needed them. And of course it did. Of course they didn’t send anyone to get me.
Fifteen minutes before my appointment, the transport still hadn’t turned up so I called the radiotherapy department who investigated what was going on and apparently I’d turned the transport away so away they went. Which meant I ended up having to get myself a rather expensive Uber. And no one wanted to take the trip so I waited ages. In the end I had to use Bolt.
I feel like I deal with quite a lot… I rarely complain, most things don’t bother me, or at least I work hard at making sure they don’t. Because I just want to try to get on with it, to enjoy my life as much as possible. But this really got to me. I can’t get onboard with being expected to wait at the hospital for five hours before my appointment! My days are so precious. I should be being cared for and looked after. I am the patient. I am the person we are doing this all for!
I was assured that the car coming five hours early was a mistake, but that I should expect to be picked up any time from two hours before my appointment. So if they hadn’t decided I’m going to drop dead any minute, I’d be able to get a car ordered, which would pick me up at the right time, minimise my time at the hospital, and all would be good. But instead, because of the placement of my tumour, and how scary and serious it is, I get my nice things taken away that would really have added to my quality of life, and I’m expected to wait for hours and hours in the hospital for my half hour appointment.
Cut to this morning and the ambulance minicab thing tasked with picking up all the patients turns up at 8am for my 11am appointment… I thought I’d get to do my hour of writing then I’d be in the two hour pick up window. But alas, as soon as I get on Zoom, I get a call saying my car is out front.
‘You’re very early…’ I said to the driver.
‘I’m not really… I mean… your appointment is at 9. That’s only an hour away…’
‘No… it’s at 11…’
I showed him my piece of paper, and he shook his head, confused as to why we had different appointment times listed. Me too, mate. Me too. He said that if I could find my own way there, to do that instead of going with him because it didn’t make sense to be there so early.
I had a soul-filling visit from my dear friend Shiri on the weekend and as we sat on my sofa, a glass of champagne in hand (coz life’s too short, drink the champagne), she reminded me how much I love getting the bus. And she’s right. I think I’d rather make my own way there and back rather than wait around for hours every day. So I may give the transport one more go, obviously I’m super grateful that they’re picking me up at all, it’s just so wonderful that it’s an option, but I think it maybe just isn’t going to work for me. I live so close to the hospital that I can bus it and I’m trying to make the most of the moments I have left in this life and that involves limiting my time at the hospital even if it means maximising my time on bus.
I made sure my outfit was on point for my first day of course, and got quite a few compliments on my new jacket. The way I present myself to the outside world and what I wear is so important as a way for me to feel somewhat in control of my situation. I’m giving people something to comment on other than the fact that I look different, that I’m wearing an eye patch, that there’s something ‘wrong’ with me. It’s a way for me to sort of take control of the narrative. On the first day the radiographer said ‘it’s fine for today but in future, please don’t wear glitter eye shadow, just because if there’s any metal in it, it might not react well with the big zappy machine.’
Of course I’d turned up with gold glitter eyeshadow to match my gold eyepatch. It’s one of those environmentally friendly glitters, so I imagine it’s not going to be an issue. But noted, tone back the eye makeup slightly. Rosa and I went for a pint after our first zappy sesh too, which was amazing. It was brilliant having her there with me. Although she couldn’t actually come in with me, having her there for the before and after was so helpful. I could not have been more glad of her presence, love and support. And Clarence too. We make a good team, the three of us.