For my second Enbrel injection, I spent a night in hospital so doctors could observe how I reacted to the drug. As expected, I was the youngest on my ward by 30 years, with the oldest patient being 56 years older than me. I arrived at 9am last Thursday and left at midday the following day. My specialist nurse arrived to administer the injection around 2pm and then it was a question of waiting to see if anything happened. A student doctor turned up and wanted to chat about my experiences of rheumatoid arthritis and Ehlers Danlos Syndrome. He was especially interested in the reactions and side effects that I’ve had from other drugs, and asked permission to write an essay about my case. I said it was fine. It was impressive that he asked intelligent questions and showed a real interest in what it’s actually like to live with chronic illness. It got me thinking of some doctors who could actually learn a lesson or two from this student.
The next morning, still in bed on the ward, a consultant (accompanied by a handful of student doctors) turned up and insisted that I could go home, seeing that I didn’t have a significant reaction to the Enbrel (at that point). I spent some time saying goodbye to the women in the beds next to me. They were all very friendly and we had got on well, thrown together due to our shared (but different) medical problems. I was touched that P (the 92 year old lady lying in the bed opposite me) and one of her visitors offered me some yellow tulips, seeing that the hospital wouldn’t allow them for ‘health and safety reasons’, which seems ridiculous to me. I scrabbled around for a suitable gift in return and plumped for a crossword book I’d only bought the day before but hadn’t had the chance to use. Then, another of her friends helped take my bags downstairs and got me a cup of peppermint tea. A kind gesture that meant a lot. When you’re struggling with your health, the smallest things that other people do for you make the biggest difference.
Two and a half hours after leaving the hospital, I was back in A & E with burning lips and small blisters forming on the inside of my lips, as well as a hot sensation in my throat. I had phoned my specialist nurse who urged me to come back. I was pretty distraught and had to drag myself there. The rheumatology registrar knew I was coming so I didn’t have to wait too long. I took an anti-histamine (but no steroids this time) and had observations taken at regular intervals for the next hour or so (blood pressure, heart rate, oxygen saturation levels). Several hours later I was free to leave as they said I was experiencing side effects rather than a serious reaction. I was relieved but not entirely reassured, as who knows what will happen after the third injection?
I finished the day with friends at Tate Britain’s late night, which provided a welcome contrast to the past two days in hospital. Dancing digital images in an ‘1840s gif party’ competed for attention with sculpture, DJs, live storytelling and film screenings. A perfect distraction and there was no mention of health or hospitals all evening.