This treament may kill you Part II

The days between the initial meeting at Charing Cross and the beginning of my chemo regime were filled with nerves. My mother-in-law, who had stayed at ours and driven us to and from Charing Cross, called us in floods of tears to tell us she had Covid. She was probably the most careful person I knew when it came to protecting herself and others against Covid. It was just one of those unfortunate things. Covid for me would mean a delay to my treatment of at least a couple of weeks. It would also likely mean I wouldn’t be able to have the bleomycin at all, due to the impact it has on the lungs. My team advised me to test at home every day and get a PCR test a couple of days after contact. Amazingly, both Lambros and I managed to stay Covid-free. It was a massive relief, not just for us, but for my mother-in-law who felt terrible, despite it being totally out of her control.

So on 6th March 2022, we headed off to London, both trying to forget that we should have been celebrating our marriage instead. Another thing that Covid had destroyed was hospital accommodation for relatives, so we checked into a Premier Inn that had literally opened that week just around the corner from the hospital. This chemo malarkey was going to cost us a fortune. The first thing we noticed when we walked into our room was how high the bed was. In hindsight, we should have booked a disabled room, but when you’re newly disabled, you don’t think of these things. I was so used to the world being accessible to me – it was certainly an eye-opener. A carefully-positioned footstool later and I managed to climb into the bed to try to get some sleep ahead of the big day.

The next morning, Lambros walked me to the hospital before returning to work from his glamorous Premier Inn base. I felt like it was my first day at school, as I tried to navigate the massive hospital, lugging my huge bag around with me. I hate rushing and being late so my anxiety was through the roof. I had a packed schedule, starting with a meeting with one of the registrars and then more blood tests. Next up, more imaging which meant yet another cannula. I convinced the radiologist to let me leave with the cannula in, just in case they could use it for chemo (they couldn’t). Then my final stop before chemo was a hearing test. Because the chemo was likely to damage my ears, they needed to take a ‘before’ comparison. Just as I was leaving the audiology department, I got a call from one of the chemo nurses asking where I was. I’m sure plenty of people don’t show up for their first day of chemo and she was worried I was one of them.

I finally arrived onto the ward, exhausted and relieved that I could sit and stay in one place for the foreseeable. That relief was pretty short-lived. The nurse wasn’t impressed with my ‘here’s one I made earlier’ cannula in the crook of my arm, explaining that cannulas for chemo always had to be in veins that you couldn’t bend i.e. in the back of your hand. It made sense. I hated the feeling of having a needle in the back of my hand, but whenever I had cannulas in my arm for a prolonged period of time, they were always the ones that failed and caused tissuing. And I certainly didn’t want chemo drugs leaking outside of the vein. Old cannula out, new cannula in, anti-sickness meds taken, and I was ready for chemo drug number one – etoposide.

I read something recently by a paramedic about people’s last words. He said most people say something along the lines of ‘I don’t feel so good’ just before they die. It’s a red flag for medical professionals. Mere seconds after the etoposide infusion had started, I remember saying something very similar as I perched on the side of my bed. A nearby nurse sprang into action, shouting for help. The next thing I knew I was lying on the bed with an oxygen mask on, surrounded by people calling my name and a nurse gently stroking my arm. Luckily I’d timed nearly dying with the doctors doing their rounds. I was given a couple of injections to control my reaction and within thirty minutes, I was sat up eating my dinner as if nothing had happened. It was terrifying but apparently relatively normal. Naturally, our bodies are pretty quick to try and reject the literal poison entering our bloodstream. My body had decided to treat me to a little bit of anaphylaxis. The best way to describe it was ‘I don’t feel so good’; my chest tightened, my vision blurred, I was lightheaded, my stomach cramped, and I was bright red and dripping in sweat. I was bradycardic; my heart rate dropped below 50 bpm.

So, what now? Would I be able to carry on with chemo? Thankfully, there was a solution. From then on, I’d be given a strong antihistamine before each etoposide infusion. The infusion would also be run at a slower rate, meaning it was less likely to shock my body. After a couple of hours, we were ready to go again. I was very apprehensive, but it worked. And just like that, it was onto the next one. Before my cisplatin infusion, I was given potassium and saline infusions to help protect my kidneys. I was also weighed before and after the infusion, as cisplatin and all the fluids you’re given with it can cause water retention. My first infusion resulted in a 1kg gain. Because of the delays caused by my little incident, my bleomycin infusion wasn’t started until the early hours and was still running at 10am the next morning. You can forget about sleep when you’re a chemo inpatient.

It wasn’t until I’d actually started chemo that the reality of it really sunk in. Okay, I’d had a particularly dramatic start which had made things a little more difficult, but it dawned on me that this was my life for the next couple of months. I just had to make it through.