It was day four and the ciclosporin seemed to be working. I was still having to keep a poo diary of how many times a day I was going and what it looked like, but I thought things were looking promising as they were improving gradually.
I was also still hooked up to the ciclosporin pretty much 24/7, I was up to bag number twelve with each bag lasting eight hours. I was originally only prescribed ten bags because I was told if the drugs hadn’t made a significant difference in 5 days, then they weren’t going to help and I would be having surgery on the sixth day. As the five day cut off was the 27th, I assumed that everything was heading in the right direction…
The night before, the cannula in my hand had become really sore and I refused to let them give me any more drugs intravenously until they put a new cannula in somewhere else. That’s right, the girl with the fear of needles requested another needle to be jabbed into her! This wouldn’t be a problem for most people however my veins had started to give up on me by then and there was only one nurse who could get cannulas to actually stay in me. Only problem was, it was 11pm when I needed the next lot of ciclosporin, so the main lights in the ward were turned off for the night and the lamp in my cubicle wasn’t working – it was a good job that both us of had iPhones we could use the torches on! So there was me laying there late at night trying to hold two iPhones in the same hand so Angela (the nurse) could see, but at the same time I didn’t want to see the needle itself so I had my eyes closed. My hand with the iPhones in was shaking because it was weak from the old cannula going bad so we tried to make a stand for me to rest my hand on out of pillows and teddies and anything else we could find. She managed to get a vein on the second attempt which wasn’t too bad considering no one else could, however it was the being we’d purposely not put a cannula in as it was the only one the phlebotomists could take blood from each morning.
I was still dotted up for surgery, so even though my symptoms were mostly improving, every time I had a shower there was a constant reminder of what may eventually happen. It freaked me out to be honest, and I know I buried my head in the sand. I was past the five day cut off point so I assumed I’d escaped the scalpel. But then at the same time, it got to 11pm and 4am every day / night and I was running to the toilet crying in pain. It was so bad some nights I had to be helped to the toilet.
That afternoon in particular, the pain was the worst it had ever been. I’d moved to a different bay in the ward as I wasn’t getting any sleep in C Bay and the doctors and all agreed that wasn’t helping me. My new bed was closer to the toilets, literally 20m at most. I was sat in bed talking to Mum and Dad (it was visiting hours at the time and they’d bought me in pizza as I didn’t like the sound of anything on offer for lunch that day) and I knew I had to go to the toilet as soon as possible. I had the worst shooting pains all of a sudden so I tried pulling the charger from my drip stand out the wall but I wasn’t strong enough and I bent over in pain, suddenly crying. Mum or Dad (I can’t remember who) pulled the charger out so I could dash to the loo but by then I was struggling to stand and just curled into a ball next to my bed, clutching my stomach and holding my drip stand. I practically crawled to the toilet, using the drip stand and Mum to try to stop myself from collapsing on the floor because I knew if I ended up on the floor I would mess myself as I wouldn’t be able to stand up again, and that wasn’t an option.
It must have taken 30 seconds for me to get to the bathroom, if that. Thirty seconds doesn’t sound very long but when you feel like you’re about to mess yourself, I can assure you that any amount of time is too long, so this felt like a lifetime. Even when I got to the toilet and was sat on the seat the pain didn’t go away, which quite often it did. Mum went to get a nurse who gave me some oramorph. After five minutes or so of just sitting there in pain the oramorph had kicked in and I walked out the toilet like nothing had happened.
The pain was like that late every night and early every morning, but Mum and Dad had never seen that before as it was always out of visiting hours. They’d seen the state I was in when I was admitted but things had improved during the day, it was only at night that they were extremely bad.
Later in the afternoon, Dr Gooding’s was doing another round on the ward and the nurses had told him what had happened and he’d asked how I was doing then, and I said better because at that moment in time I was. It was then that he told me that if I needed any more oramorph later that day they would have to operate because even if the majority of symptoms were improving, if I still needed oramorph they couldn’t discharge me as it is morphine based. This scared the hell out of me because I didn’t want surgery, although no one had actually asked me how I felt about surgery at that point. It was only when a junior doctor came round later to talk to me about something else that I was asked how I felt about having surgery, to which I replied “I don’t want it.”
That night, sure enough around 11pm the same happened. And again at 5am of the 29th. I rushed to the loo and was crying in pain for a good ten minutes or so, and I was offered oramorph as I’d had paracetamol when I woke up earlier that night so couldn’t have any more of that. At first I refused it because of what Dr Gooding’s had said, however the nurse (I can’t remember her name but she was lovely and one of my favourites) told me I couldn’t sit on the toilet crying all night and it didn’t matter what Dr Gooding’s had said, all that mattered was there and then, and she wasn’t prepared to sit and watch me be in as much pain as I was. She was lovely and didn’t word it quite like that, but I can’t remember her exact words, I was too busy crying. After I agreed to let her give me some oramorph she then helped me walk back to my bed, when I felt like I could leave the toilet, and sorted my pillows out again for me, for the millionth time that week. Oramorph was brilliant becasue it worked, but I didn’t like how often I was starting to need it. It completely knocked me out though so one perk was that it helped me sleep better.