Today I woke up all panicky. Do you ever have those days? When you have an oppressive feeling of overwhelm? I didn’t sleep much last night. Well I suppose that’s quite standard these days, but with the combination of having had a coffee at 2pm (is that a thing now? Does an afternoon coffee keep me awake all night?) and there being a lot going on outside my bedroom window last night (sirens, people playing loud music, arguments and what sounded like a brawl… like seriously? What was up with last night?), I feel like I’ve started on the back foot today.
I don’t know if you notice this too, but when you’re already on edge, everything that happens seems that bit more stressful, like you’re not emotionally stable enough or well equipped enough to deal with minuscule things happening throughout the day. Everything seems to throw you.
Also after cancer you get massive life FOMO or something, and want to do everything, but your body (and mind) is just not capable and it’s this ever unbalanced cycle of doing everything and then having to do nothing. I usually feel like I’m on the verge of getting it right but never quite there. Some weeks better than others.
I was really ill for a couple of weeks (burnout? Maybe… Or just that time of year) which meant lots of moping around. Among other things, I was feeling really feverish so I took my temperature. 38. Shit. Panic. Call the Oncology hotline. No wait, it’s ok! That’s ok! A temperature is ok when you’re not neutropenic! And exhale. During chemo a temperature of 38 degrees would mean rushing to A&E because I had an infection and no white blood cells to fight it off. Without treatment and the right antibiotics swiftly, that would mean things were looking quite worrying. But now it just means a few days on the sofa. Triggered, but safe. Whatever has been going around at the moment has been far from fun though. But I’ve been back in action for a couple of weeks now.
The day before I got horribly ill, I gave a talk at an Advanced Airway Management Course for about 300 Anaesthetists and related staff. That timing worked out well, though it’s very reminiscent of being back at school/uni when you used to get ill after exams/term time when you had the time and space to rest. Our bodies do some interesting things like that, hold on until it’s ok to crash. Anyway, it was such a wonderful day and the feedback was incredible. I hope some more similar things come out of it, as I feel like there is a lot that can be done in the space of relating my thoughts and experiences to medical professionals. It seems useful for all involved.
But fast forward past the illness, I had a great week last week. A couple of standout events. One of my friends and I went to see a play written and starred in by someone she went to university with. Afterwards we went upstairs to the bar and were in the middle of being told about the fact that there was a ‘Trans Voices Cabaret’ night on when a flash of colour and wonderness came running up to me with a hug, and I found out that another friend was there for the TVC event. What are the chances. London is always surprising like that. So we stayed and were treated to a night of four absolutely incredible performers, and just a general wonderful vibe filled with support and love. I left that buzzing about the whole series of events.
On Saturday was Pride. My first Pride, which I realise is ridiculous that it’s taken me this long to get to one. What an absolutely fantastic day! A big group of us traversed the crowds and eventually ended up in St James’s Park having a bit of a break (and eventually at a pub). In another feat of strange interconnected-ness, while we were watching the parade, one of the performers from the TVC night on Thursday spotted me and said Hi. I have stalked them on Twitter and will be going to everything they ever perform. What a talent.
So it was a great day, but a long day. And a big day. Lots of crowds, lots of glitter, lots of partying and friends, but it meant I spent Sunday recovering and as a result didn’t feel like I got much achieved on the weekend. Monday appeared again and I felt like Friday only just finished. I didn’t really feel refreshed.
We have a culture of achieve, achieve, achieve… Or do, do, do… It can be hard to embrace the need to rest, rest, rest.
I have to remember that I’m still recovering. I had a chat last night with one of my friends who lives in Germany. I’m not sure why it’s relevant where she lives, I think I probably just want to sound cool for having a friend who lives in Germany. She was saying she’d had a difficult day and had been told to ‘find something to make her happy’. Which is great yeah, sure. But we discussed how sometimes there are just downs you have to endure. That the expectation of being happy all the time is deceiving and unhelpful. It’s a difficult one because obviously we should make whatever changes in our lives we can to be happier, absolutely. And we should seek out things that make us happy when possible. But total happiness all the time? Just no. We’ve got all these human emotions, we should use them. We should listen to them. We should work on good ways to help manage them, but to expect them never to happen is just setting ourselves up for failure, and for struggling even more with any difficult times that life throws at us.
She showed me this amazing picture she had created with a quote she had written. I asked if I could steal it, so here it is. It was a timely reminder. Maybe some of you need it too.
I was speaking to another friend the other day (not one from Germany – though you would be forgiven for thinking they might be, given what’s coming next – but incidentally the one I ran into at the TCV night, Rosa) and she was saying that she feels like we’re all a bit all over the place and a bit ‘floating’ at the moment. Who did she mean by all? I think probably a fair few of us friends from the cancer community are in similar places in our ‘recovery’. I’ve said it before and i’ll say it again, I think this part is the hardest, and we’re all a little lost. She later posted something on instagram about a fantastic German world that I wanted to share with you all, that I think also sums up life and the world a bit at the moment:
/ˈvɛltˌʃmɛːts, German ˈvɛltˌʃmɛrts/
a feeling of melancholy and world-weariness.
Why do The Germans have all the good words? Anyway, I was reminded to take my own advice that it’s ok to not be ok. Ah yes, noted. Well, on the flip side, it’s also not just ok if you’re really not ok, you shouldn’t have to just put up with it ongoingly, there are loads of resources to help. But it’s perfectly ok and normal to be struggling at times. As for my resources? Here is what I am using at the moment to stay sane.
Listening to my happy playlist
Watching ‘The Ponds’ documentary (it’s on BBC iplayer for another month for all you UK people, search for ‘swimming through the seasons’)
Trying to find time to go for a swim at the Lido – but not beating myself up that I haven’t been able to go for a few weeks
Trying to make time for pole dancing (my new fave Saturday activity and hilarious because I’ve lost a lot of my shoulder but I’m actually ok at it!) – but also not beating myself up as above
Walk to work, but only if I’m feeling up to it
Listening to ‘The Art of Asking’ by Amanda on Audible (if you have Audible, I can recommend you get on it)
Using the Headspace app. So far today I’ve used their ‘SOS panicking’ one which was great
Cutting down on coffee and alcohol for a little while
Chatting to my friends
Reading instead of TV
Breathe (why is this so hard to remember to do sometimes?)
Writing down all the ideas that fly into my head to let them leave again
Making sure I spend the hour before bed winding down
Try to get outside. Walking around London is one of my favourite things.
BEING KIND TO MYSELF
Does anyone else have any things they do when they’re feeling like they’re struggling a bit with life?
A few pics to leave you on…
My Pride attire: