Tuesday 25 June 2019

I’d had pretty patchy sleep and was tired in the morning. My stomach also felt a bit uncomfortable.

However, I was due to be staying on the chemo ward for the next three days, so I got up and called the hospital at 8:30 to see what time they wanted me to come in. Unfortunately, they had no beds available and said that they would have to give me a call back later to let me know what to do. I spoke to them again around lunchtime and it sounded pretty bleak. They didn’t think they would have a bed available for me in time to make a start. I did feel a bit put out, but I could understand that there are only so many beds and scheduling patients is not an easy task when it’s not known exactly how long some of them will end up having to stay in for.

They gave me another call just before 14:00 and said that they would have a bed later in the evening, so if I could get in as soon as possible, they would get me started on my chemo in another room and then I could move to the bed as soon as it was ready. That was good news and cheered me up.

Pia got me to the hospital just before 16:00 and I was taken to the TYA (Teenage and Young Adult’s) lounge, where I was given my premeds and then hooked up to an IV pump to get treatment started.

Pia and I were the only people in the TYA lounge. There was a kitchen, pool table, table football, a juke box and loads of games and guitars and things. We got some music going and played a round of pool and scrabble.

When my bed was ready, it turned out that I was being put in one of the private rooms in the TYA end of the ward. That was quite nice! More spacious, with a sofa, desk, private bathroom and even a Banksy print on the wall. It was also quite a bit cooler than the four person room I stayed in previously. The sofa is such that it can be used as a single guest bed, as I’m sure a parent often ends up staying overnight when they have a teenager receiving inpatient treatment. I was told that I might be shifted out of the room if they needed it for someone else, but I managed to hold onto it for the duration of my stay.

My treatment protocol was exactly the same as for cycle 1 and took me through until just after midnight. Pia stayed until around 20:00 before driving home. After she left, I tried to get a bit of this blog written, as I was almost three weeks behind! I managed to get a bit done which was a good start, but I was also getting tired and hoped for a good night’s sleep.

Tuesday 04 June 2019

I had a bed in a room with three other gentlemen, all of whom looked to be in their seventies and were in far more serious states of health than me. Two of them were receiving radiotherapy treatments and were suffering with a lot of pain and nausea. I don’t know what the third gentleman was in for, but he was on some pretty heavy opioids which made him quite disoriented and forgetful at times.

Before my chemo started, I was given some preliminary drugs. I had one Akynzeo capsule, which is an anti-nausea drug that remains active in the system for five days. I was also given six Dexmethasone steroid tablets. These can help with nausea and inflammation.

After waiting around for a while, I was hooked up to a drip around 16:30. My IV fluids for the session were:

Etoposide – 500 ml over one hour
Etoposide – 500 ml over one hour
Saline – 1000 ml over one hour
Mannitol – 400 ml over half an hour
Cisplatin – 500 ml over one hour
Electrolyte solution – 1000 ml over two hours

At the end of some of the allotted durations, some of the bags still had a little left in them, so a few minutes were added to ensure that all of the fluids had been used. With that extra time, plus the time it took to change the bags, the entire session took around eight hours and finished after midnight.

Bag change times can be variable as it depends who is available to do it. Any nurse is able to change a regular bag of fluids, but two nurses are required when a bag containing chemo drugs is being put in place. The nurse administering the chemo needs to be specifically qualified to do so, and a second nurse is required to check that everything is correct: the correct patient, the correct drug, the correct volume and rate of flow. Consequently, they are continually asking patients to confirm their names and dates of birth.

All of the extra fluid in my system meant having to visit the toilet frequently, roughly once every 500 ml, in my estimation. When doing this, I needed to unplug my IV pump machine from the mains (it has a battery which can handle several hours of use on a single charge) and wheel it to the bathroom with me. Then I had to urinate into a cardboard bottle and leave it for the nurses to collect. They would then measure all of my fluid outputs to compare against my fluid inputs, to ensure that enough was passing through.

Pia and I had slept less than six hours the previous night and had not had very long sleeps on the previous few nights, so we were both quite tired by the time the chemo started. I felt more and more tired as it progressed and had some headachy symptoms, but nothing too bad. I’d brought my laptop with me so we were able to sit on the bed and watch some films while the fluids were going in. Pia left about half way through the session, before she got too tired for the drive home. After she’d gone, I just felt like sleeping, but remained awake until I was disconnected from the drip.

Once the session was complete, about half past midnight, I fell asleep straight away. I woke up about two hours later to go to the toilet. I had a dry mouth and felt a bit disoriented. I couldn’t get back to sleep after that, so I put on headphones and listened to a couple of guided meditations, which were relaxing. I dropped off again a couple of hours later, after another toilet visit. Between the IV infusions and drinking a lot of water, toilet visits are becoming quite a major daily activity!