I know it’s now October, so no longer summer at all, but this felt like an appropriate song title to write a little bit about my experience of spending what feels like all my time in various different hospitals and wards. I’m not an inpatient at the moment which is a relief and so after radiotherapy sessions I usually get to go home (or after another appointment if I have one!) but the feeling of everything being about being unwell persists – which is particularly frustrating when a lot of the time I feel okay. It’s particularly bad in hospital because there’s little to delineate time – it’s easy to feel like you’re just waiting for the next meds or ward round or obs. At home at least time feels divided by meals and TV schedules, though I’m still taking huge numbers of meds.
Since being admitted in Italy, I’ve spent more days in hospital than I want to count, and with radiotherapy ongoing for the next five weeks that’s only going to increase. Even when I’m not in hospital, some days (when I don’t leave the house) I only really see the walls of my room and a couple of rooms downstairs. Going on trips helps with this because I get to see something different and have a break from that. I’ve written before about this but it gets more and more true. A phrase I heard on the news recently was ‘living not just surviving’ and that’s what I’m trying to do.
As well as daily radiotherapy appointments, I have check ups with the consultant, appointments with various physiotherapists and ophthalmologists, and lots of blood tests. Over the next five weeks my life will be ruled by hospital visits – but in a way that just becomes the new normal. It’s amazing how quickly anything becomes routine, but I am determined not to let this be the only thing in my life. It’s not possible to escape from it but I can try and schedule my life and time so that it isn’t all about treatment, even if it feels like it at times.
Certainly while I was in hospital in Italy it was hard to escape that mindset – partly due to the language barrier and also because I was supposed to be on holiday. We had day trips planned to Verona and the Dolomites which we cancelled and I had been hoping to spend lots of time exploring and eating good Italian food and drinking Italian drink (although as I wasn’t keeping anything down, that was never going to work!)
It was also hard in hospital in Birmingham but less so, mostly I think because I was properly in hospital mode rather than holiday mode. Being back in a country where I knew the language and was closer to people I care about and who care about me helped too. Though again, I can’t stress enough how grateful I am to the Italian health system.
Life spent waiting for discharge or living from one appointment to another gets horrendously boring. Complaining about feeling bored feels immature right now but I’m trying to be honest (while also hearing one of the headmistresses I had as a teenager’s voice in my head whose favourite saying was ‘only boring people get bored’) Having a kitten definitely helps because she takes up quite a lot of time! I’m also getting back into baking. In a probably less productive way, so do many TV shows – there’s a stereotype that the reason there are so many cancer adverts between things like Tipping Point and the Chase is because cancer patients are the only ones who watch them and all I can really say to that is that some stereotypes probably exist for a reason… Though the fact I have the times and dates for Bake Off and Strictly in my diary probably means I fully fit those stereotypes!