In fact I’ve been off running around Edinburgh at the Fringe Festival. I booked it when I was well – remember those five or so minutes after I recovered from chemo when I was able to live life again? Yeah, then.
Since then, things have gone rapidly downhill. All this business of ‘you might die any day now’ and ‘wait for radiotherapy which we don’t think will work but will take 4 weeks for it to start working, if it’s going to’. Ugh. I’m sick of it. So I ran away to Scotland.
I’d booked myself into a hostel which sounded great a few months ago – it’s my favourite hostel and it’s right in the middle of Edinburgh and I’m easy-breezy-go-with-the-flow Jen. Until the GP hasn’t ordered my pain meds in time for me to go away so I’m left with the dregs I have left. And until it’s 4am on my first night and I’ve not had a moment without pain since I went to bed nor managed to get a moment of sleep. And there are lots of strangers in the beds around me. No then, I’m shit-what’s-going-on-and-when’s-it-going-to–end–panicky Jen.
I’ve had panic attacks in MRIs before, we all remember them. But they’re one thing, they’re situational, it’s going to end, I’ve just got to get through it and then I can escape. But when I’m panicking about my literal life, well, I can’t escape. Escaping my life is what I’m desperately trying NOT to do. I felt trapped.
After not getting much sleep at all that first night, on day two I put my best foot forward and tottled along to a show I’d booked about people joining a cult (who isn’t fascinated by cults?). Ok… I didn’t really enjoy it, I wanted to get out. I kept looking for the exits to see if I could escape. If I could just climb over that person… They wouldn’t mind, would they? I managed to not flee the scene but the play ended with one character shooting another… I looked at my planner to see what show I had next and it was one about grief and loss… I decided maybe I’d skip that one. I did go and see an incredible show I’d been desperately looking forward to, where I was so engrossed I mostly forgot about desperately wanting to escape but I still wasn’t feeling great.
Night two in the hostel I hoped would be better, but the room was completely full (eight strangers, one bathroom), exceedingly stuffy and I had a man on the bunk above me. I made sure I opened the window before I went to bed because it helped me to feel less trapped. The pain was a bit better and I managed to get some sleep in my exhaustion but at around 1am, there was a lot of noise outside, I presume as people were leaving the bars. I wear earplugs in a hostel because I’m not insane. So the noise didn’t bother me too much but after a short while the guy above me climbed down and shut the one window that connected us to the outside world and guess what… my feeling of being trapped was once again triggered. Panic panic. Why are you panicking. Stop panicking. Stop it. Come on. After about 20 minutes of trying to keep myself calm, I had to get up and open it again. Rushing in came the noise, but so did a semblance of freedom and some fresh air and I could breathe again. No one closed it again after that.
This idea of feeling trapped was starting to permeate every part of my day – trapped by my circumstances, by my body, by the pain, by my life or more particularly the shortness of it. The way it seems to be rapidly hurtling towards its end…
The next morning I was messaging my parents and I told them I thought I either had to find somewhere else to stay where I could have my own space, or I had to try and get a train back to London. I just wasn’t enjoying myself. I really didn’t want to leave, I’d had a fabulous time the first night before it went bad and Edinburgh Fringe is my happy place. I felt like I’d hardly got to live out my Edinburgh dream, but this wasn’t the one. My wonderful parents said if I could find somewhere else to stay, if there were any hotel rooms left, to just book it and they’d transfer me the money. They could help. They wanted to help. Would I please just let them help?
After a few stressful moments of not being able to find either rooms or trains, I managed to book myself into a Premier Inn and off I went to check in. Phew. My pain team-of-dreams were in contact with me too, via email, which felt like a lifeline but gosh it also helped to highlight how far far away I was up there in Scotland because the NHS isn’t connected and there’s no way for them to get my any of my prescribed painkillers, short of me going to A&E and asking if someone would give them to me. I guess I felt quite alone.
But the Premier Inn was the respite I needed – my own space, it even had a bath. I was safe again. I took myself to a seafood restaurant just down the street and treated myself to oysters and lobster for lunch. I thought I’d been struggling with appetite but when that was put in front of me, I devoured it. That evening I went to a show which was the first one I’d booked. When I opened up the Fringe Festival program the first time, I opened it to had an ad for a show called ‘Rebel’, a David Bowie Circus. Never have three words spoken to me more. I’d booked it in immediately. So after sorting out my room, eating some good food (and seeing another show I was really excited about but ended up being disappointed by) I made my way across to the circus hub. The troupe were Australian and the show was possibly the best show I’d ever seen (second only to Madame Ovary, of course). The guy who sang and performed Bowie was spine-tingling brilliant and the musicians who did the backing, as well as performed incredible circus acts (trapeze, silks, pole, juggling, etc.) were incredible.
Gosh I felt Bowie there with me that night. I sat there, tears rolling down my face, completely engrossed in this life-changing performance. Bowie of course died of cancer and as I sat there watching this mind-blowing renditions of some of his greatest songs, I asked myself if I thought he seemed trapped. If anyone is the opposite of trapped, I think it’s probably Bowie. It also felt iconic that I was there, experiencing this soul connection with Bowie, feeling his presence and yet he wasn’t actually there. That’s pretty special. That says a lot for legacy.
Seeing that show sorted me right out, and I felt healed and ready to make the most of my last two days of Fringe festival. On the final night I caught up with a friend who lives in Edinburgh and we saw a few shows and met up with her housemate and ran around Edinburgh having the most wonderful, fun-filled time. I also dragged her back to Bowie Circus again and she loved it too. It was a brilliant end to a great, but at times quite difficult trip.
It’s not a nice feeling knowing that at literally any given moment the panic levels might start rising… And I can’t really escape them. My fight or flight trigger in that moment can’t come into play because i can’t run away from… a Tuesday morning… My arm…
I find I can bring on the panic at any time, really. It’s like when you have an injury and you just keep poking it, just to make sure it’s still there, that it still hurts. I don’t intend on doing it but it occasionally just happens. When I’m in a situation I can’t get out of (like on the tube, on a train, in a show I don’t like) my mind starts to think ‘hey, what would happen if you panicked now… and you couldn’t get out… because you can’t get out right now, how do you feel about that?’
I suppose it’s good training in a way, bring it on then try and diffuse it…
While I was totally fine for my radiotherapy mask fitting the other week, I wonder if my slightly heightened levels of anxiety are going to start shouting at me today when I get in the big zappy machine for the first time and I’m all alone once again, unable to move or escape… But I’ll have Clarence with me. And Rosa will be waiting just outside. And hopefully they’ll play me The Beatles (but not covers of Beatles songs this time thanks).
I wanted to have a sacred Jen day yesterday, the day before I started this intensive regime of going in every day for [insert number of weeks here which they won’t tell me but I’m guessing is like 6 or 7?]. I’d planned to have a video call with my parents, work on some music, go to pole class, have a bath and a nice chilled wind down and feel prepared and in control. Then at 11am, just as my parents were about to call I got a call from my Radiotherapy Oncologist. It went something like this.
Him: Hi Jen, you know how you might just drop dead any day now?
Me: Well… um… yeah… So you keep telling me.
Him: And we discussed how if it happens, you’ll just be dead. Immediately. Completely dead. Gone.
Me: Um… Ok… Yes…
Him: Well the radiotherapy team won’t do your treatment unless you sign a Do Not Resuscitate Order. Just in case you drop dead when you’re in their care. Like on the radiotherapy table.
Me: big sigh Um yeah ok, I guess.
Him: So they’ll have that ready for you tomorrow when you go in and you’ll have to carry it with you at all times, into radiotherapy every day.
Me: Ok. So… Will that be like a generic DNR for like… all situations? Or specific to that.
Him: Well they’re not going to know the cause of you dropping dead at the time… and they won’t have time to find out why you’ve died and then decide to either try and bring you back or decide to leave you. So it’s just going to be a general order to not try and bring you back if you die.
Me: Oh yeah… that makes sense…
I don’t know, I’ve never had to think about these things before. A Do Not Resuscitate Order? God… that sounds just… insane. And scary. And serious.
But this is serious Jen, you’re literally dying…
To be perfectly honest, I like to stay in denial where I can. Obviously I know the seriousness of the situation… but I don’t try to think about it too much (though it does pop into my head more often than I might like), if I did I’d probably lose my mind. I don’t actually think I’m going to die soon, I’ve got so many more things to do yet and I’ve got hope that these treatments will give me more time. Otherwise why else would I do it. And there are so many exciting things coming up, I’m getting closer to living my dreams… I just take one day at a time and focus on the beautiful moments that day might hold. I smile when I realise I’ve woken up to another day and I get to fill it with chasing my dreams and seeing my friends. Some days are so joyful I think I might explode and other days I’m just getting through, feeling scared and trying to be kind to myself. As I write this, a song I love is playing by a band called Fyfe and the following lyrics just sang to me – ‘Honestly, life can’t be constantly ecstasy, but that’s OK. I’ll just take it day by day do the best that I can.’
And that’s what I’m doing.
It was hard getting that call – I don’t seem to be able to go long at the moment without a medical professional trying to remind me how dire things are. But here I am running around Edinburgh, going out with my friends, swimming on the Heath, going to pole class, working hard on my creative projects which are coming so close to fruition. And let me tell you right now, I feel very alive. And very happy in the time between the scary conversations.
Everyone’s favourite Rosa said to me: ‘next time you feel trapped, just remember how free you are.’ And indeed I am.
So off we go to radiotherapy. She’ll be there with me and I know you’ll all be there too and if i feel alone, I’ll remind myself of just how held and loved and supported I really am by so many wonderful people. So thank you all for that. Let’s do this. Let’s cross everything that it works, that I don’t need that DNR order and that this will be another adventure that will buy me more time.