• Lewis

Part Eight: Late Nights and Dark Days

Updated: Oct 12, 2020

Cycles two, three and most definitely four were undoubtedly some of the darkest days I've had. Side effects from treatment started to kick in, and this was on top of the long, long days we were spending in the hospital. esc-BECOPDAC involved me to be in the hospital from 9-5 on the first three days of the cycle for infusions, then again on day 8 for a few hours - when I wasn't in for infusions, I was in for blood tests.

Cycle two - we managed to avoid any sickness, a real bonus! However, cycle three and four, we weren't as lucky. By this point, we had worked out that Ondansetron was the only anti-sickness drug that worked for me. The only issue was you can only take this every twelve hours, and for me, it only worked for ten and a half. This left me continually battling the increasing urge to be sick until I could get another Ondansetron and more importantly, the final dose of Mesna to protect my kidneys. On both occasions I managed to resist the urge to be sick until I got my Mesna; however, Cycle three I was sick after five minutes of taking it and Cycle four I managed to hold off a whole 40 minutes before barfing, an impressive feat I thought! This resulted in us back up at the hospital on both occasions, awaking the on-call haematologist to find out if I should take more Mesna or not...Loaded up with more Mesna and three or four anti-sickness drugs, I would get home around 3 am, ready to start at 9 am the following day.

I could manage with the sickness though, it was only for one day and once you accept the fact you are going to be sick and quit fighting it - it is not that bad. The worst side effects I had during these cycles were all to do with my mind. (However, the heart palpitations and shortness of breath came a close second!) The chemotherapy drugs messing with the cells in my brain coupled with the fact that the final (we hoped!) PET scan was fast approaching would result in days five to eight of the cycle being plagued by a mist of depression. I was worried about the treatment, not working and even convincing myself that the HL was spreading. Worrying about having infections, taking my temperature constantly and checking my pulse. On more than one occasion, I found swollen lymph nodes that I took to see the consultant. It was at one of these visits we got told that they would do my PET scan at the end of cycle three.

At this point in my blog, it is only fair to pay homage to my good pal - Binnie. Mitchel and I got very close during the BEACOP days. We would go out frequently during the week for walks, a drive or to even just eat shit (most commonly the latter.) Binnie stepped up when others stepped away. I've made friends during this whole experience, and some others who I thought were my friends, I now wouldn't give them the time of day.

On Tuesday, 10th December 2019, I went for my PET scan. We waited and waited for the results. Day after day all we got was "it's not been reported yet" - a week went past, a week and a day went past, a week and two days until finally on Friday 20th December the NHS "0800 678 3393" number flashed up on my phone...