Well, that was a curve ball! Here I am, fourth day in hospital after my first chemo on 13 September.
The day itself went pretty well. I tried not to think too much about the toxic cocktail about to be injected into my body, a necessary evil, preceded and followed by numerous other drugs. The staff in the treatment room were amazing as ever. I’m sure I ordered a virgin colada, but they turned up with three virgin Mary’s and two mojitos, which were slowly injected by hand into my PICC line.
The first Virgin Mary of the day
45 minutes later I was done and sent home with a party bag full of pills, potions, and pricky things. Apart from one mad dash to the little room and some nausea in the evening, I felt absolutely fine for the rest of the day, managed a little walk, and made dinner.
The next day I felt fine again, did some work, walked for half an hour. That evening the first of the seven pricky things came out of the party bag. Cue my glamorous Health Care Assistant who seemed to relish sticking a needle into my belly every night to administer a bone marrow stimulator, which is to stop my neutrophils (white blood count) from dropping, leaving me susceptible to the slightest infection.
Since I was feeling no real ill effects, I deferred my planned sick leave and carried on working from home. By the weekend I noticed that I couldn’t walk as fast as before, a sure sign that fatigue was setting in, but I patted myself on the back for going for a short walk every day. The pricky things came out night after night and I was very thankful that I didn’t get one of the potential side-effects I’d read about and had been dreading - severe bone pain. And all the anti-sickness meds were doing their thing.
Tuesday, one week after chemo #1, I started feeling really drained. After having my PICC line checked on the cancer unit, I did some shopping and that was me done in. No walk today! By the time I went up to bed I was feeling unwell but my temperature was normal, as it was through the night. But when I checked in the morning it was 38.4 (101)!
The one thing that had been drummed into us by the doctors and nurses was the risk of infection, which can quickly turn into neutropenic sepsis. “Here’s your red card,” they said. At the first sign of possible infection (temperature over 37.5, feeling unwell, etc), call the number day or night and do what they say, or just get to the emergency department straightaway. Flash the card when you get there and they’ll hook you up to IV antibiotics straightaway and ask questions and run blood tests later.
Didn’t quite pan out that way. Firstly, no one answered the red card number (while we quickly packed a hospital bag - yes, it was on my to-do list, but I didn’t think I’d need it so soon). Still no answer 22 minutes later, so off to the hospital we go, only to come to a standstill after two minutes, stuck in the school run/commuter traffic. We crawled for an interminable half hour. Cue my HCA again, who closed one eye to send up a desperate prayer, while keeping the other on the road!
Red card in hand, I walked into the ED while HCA sorted out parking. The lady in the entrance waved me by, “Go straight through to reception.” The receptionist was unimpressed by my red card. She was busy booking an ambulance for someone. Maybe Someone was desperate too. I waited. And waited. HCA arrived. We waited. Eventually the receptionist called me. Then came 20 questions, including “What is your husband’s name?” Seriously? Finally, after screening by a nurse then a doctor, having a cannula inserted, bloods taken, obs recorded, I was finally hooked up to antibiotics and put in a corner of the triage area where I wouldn’t have too many people with germs walking past me (never mind that I was right next to where contractors were working behind a dust screen and they were in and out like the proverbial fiddler’s elbow). But I was still breathing.
At 11:15am HCA went home and they put me in a side room in A&E, where I remained until 4:15pm: more doctors, more antibiotics, a chest X-ray to rule out pneumonia, Covid and MRSA swabs. Then the dreaded words: We’re going to admit you. Just for 24 hours. And I was wheeled away like the Queen of Sheba to my very own room. No mixing with the hoi polloi. Not with my neutrophil count at 0.2 (2.0 and above generally safe but they said I could go home when I got above 1.0). Seven days of the pricky things hadn’t helped. Well, I guess things might have been a lot worse without them. So I had to have another three doses while in hospital.
24 hours have turned into four days, and I’ve just been told by the loveliest doctor that even though I’m now up to 1.6, they want to do one more blood test to make sure it’s stable. And no more pricky things. And maybe I’ll sleep in my own bed tomorrow night. And I’m in the best place to be looked after by the best NHS staff.
Sending love to you all, and praying that whatever challenge you may be facing, you’ll be carried on eagles’ wings.
Lorraine xx
