Day 6: Life on the Ward
Princess Margaret Hospital for Children (PMH)
As darkness settled over PMH, I used my IV pole as a substitute for a scooter. I was precariously balanced. I tried to stabilize my trajectory with my right foot while using my left to propel me forward. You could build serious momentum racing up the lino corridors, but the carpet’s traction in the entry foyer provided more stability. Either way, much like shopping trollies, the wheels on my IV pole never seemed to do what I wanted, and I often crashed out of the race before the end of the corridor.
IV pole racing was one way to pass the time while waiting for a turn at Gyruss, the space invaders game console, that sat in an alcove near the emergency wait room. George had a doctored 20c coin — with a hole and a string — so we could play endless games, rather than persuading our parents or visitors to part with all their 20c coins. However, this meant everyone wanted to play, so the hospital corridors became our playground while we waited for our turn.
‘We’ was everyone else who also had CF and was also an inpatient on either Ward 7 or Ward 9 at the time.
Besides playing Gyruss or using our IV poles to race, our main form of entertainment was the Adolescent Unit, located outside Ward 9, which had a TV, games, and puzzles. Another convenient place to hang around was an alcove on the top floor of the back stairwell. It was easy for those from Ward 9 to slip out and, at that point, stairs were no detriment to me, so on more than one occasion, I propped my IV pole on my shoulder and marched up the two flights of stairs from Ward 7.
As frequent flyers on Wards 7 and 9, we were allowed more leeway than other patients, and it felt like we had full access to the hospital after dark. When we were up to hijinks, the nursing staff knew our IV antibiotics were working, which was a good sign. However, this leeway didn’t extend to the daytime. The hours between 8 am to 3 pm were fairly regimented: ward rounds, airway clearance sessions, and endless medications. If you somehow managed to squeeze all that in before 3 pm, it was a requirement that you would present yourself to the teacher in the ward schoolroom.
Hosptial schoolHospital school was full of busy work. Mr. Hort, my Year 7 teacher, hadn’t given me any homework, spelling lists, or even a topic to read up on while I was in hospital. Going to hospital school felt like a waste of time, so I decided to ditch hospital school.
There was no point hiding out in my room; on this occasion, I was in one of the single rooms at the back, where instead of solid walls, it was glass from the waist up. I’d be spotted in no time. Instead, I decided to visit everyone I knew on my ward. Having finished with continuous fluids, I was now in my second week of the hospital stay. When not having IV medications, I was free of the burden of wheeling the IV pole along.
The three open rooms on Ward 7 were connected on one side by the nurse’s corridor, and on the other side, there was a long dayroom, the top end being the ‘schoolroom.’ I’d been relatively lucky in my clandestine visits until I strolled out of the end room. Bam! The school teacher spotted me. I ducked and weaved, racing all around the ward, in and out of rooms. I even hid for a while under another patient’s bed.
Eventually, I realized the only way to avoid capture was to get to David’s room. David, a fellow CF patient, was in one of the single rooms right next to the nurse’s station, and his room had solid walls. It would be a great place to hide out. All I had to do was get there without being seen. I dashed down the main corridor of the ward and ducked inside. I shut the door swiftly behind me, panting. Then I slunk down with my back to the door.
I gave David a quick wave of my hand to say hi as I caught my breath. As I did so, I noted a woman I’d never seen before in one of his visitor’s chairs. Perhaps his aunty or a neighbor — something like that. Breath regained, I stood up and plopped myself into the chair on the other side of David’s bed. I ignored the woman occupying the other chair, which turned out to be a bad move. The first words out of my mouth were gleeful, “I escaped the school teacher!”
The woman, who turned out to be the school principal, stood up. Her nostrils flared, and to my dismay, I was frog-marched to the schoolroom. My short-lived rebellion was over.
31 Days of Cystic Fibrosis Bonus Fact
I may have been a little too gleeful when I subverted the system and my IV packed up after 10 pm — it meant a night free of the IV as procedures after this time was not allowed.
Day 5: CF Camps
Our shared experiences connected us, making an unlikely bunch of children with differing likes and dislikes firm friends.
Fun in the sun
There were lazy summer days at the beach, tube rides, and the occasional day trip. On the days spent at the campgrounds, we’d participate in mini Olympics (which saw some bedsheet togas appear one year) or slide down our homemade waterslide.
Even physio, normally a boring daily chore, was fun. We would line up and chat as we waited. The line for Lappa was always the longest; he had a gentle way of performing percussion, which always made physio seem more like a massage.
The Nighttime bonding
Lights out meant the start of endless chats. It was where we shared our stories and learned from the experiences of others. We shared our fears, our hopes, and our dreams. At camp, I learned what my future held.
It gave me a greater understanding of CF and the need to stay healthy for as long as possible. I learned about infusaports, coughing blood. I saw what the progression of my disease looked like.
Knowledge is power, and when my health started to decline I knew what to expect.
31 Days of Cystic Fibrosis Bonus Fact
When playing Capture the Flag with other children with CF, the main problem is that inevitably someone would cough and give away their hiding spot.
… and a horrible fact
Due to cross-infection guidelines, people with CF are not encouraged to meet in person; there are no more camps or social activities. Some people with CF have never met another person who also has CF. The isolation, along with the harsh medical regime, has seen mental health issues in our community rise significantly.
Sandi Parsons - Cystic Fibrosis Warrior.