Tag: Drugs

BEP Cycle 2 Day 9

~ andrewamies ~ Leave a comment

Wednesday 3 July 2019

Today was another day chemo day. My arm was still bothering me a lot in the morning, so I called my oncology team’s emergency number. They asked if there was any redness, or if my arm was hot or firm. There was no redness and my arm felt more soft and tender than hot or firm. They said I didn’t need to come in and see them, but that I should be sure to mention the issue to my day chemo nurse in the afternoon.

My day chemo appointment was at 14:00. I was very tired on the drive to Bristol and I wasn’t very talkative. We arrived on time and I checked in for my session. I was called in almost immediately.

I explained how I was feeling to the nurse. She had a good look at my arm and asked a number of questions. Then she got one of her colleagues to come and have a look. They were concerned that one of the veins in my forearm was popping out a bit, which could indicate too much pressure in the area. That particular vein has always stuck out a long way so I wasn’t sure that it was telling us much, but I’d been feeling that my forearm was a bit heavy and wondered if it was slightly swollen. The nurse had a quick chat with someone from the PICC team and they arranged for me to go for an ultrasound scan as soon as my chemo had finished. This would be to see whether there were any signs of blood clots in the area of the PICC line, which can easily occur.

Having the dressing on my PICC line changed

I had some blood taken and the dressing on my line was changed. My treatment then proceeded with half an hour of saline, some hydrocortisone, half an hour of Bleomycin and fifteen more minutes of saline. That all went smoothly. We then legged it down to another part of the hospital for the ultrasound.

I only waited a few minutes to be seen. The sonographer started by checking a vein in my neck, then moved into the shoulder area and continued down my right arm, along the PICC line. What they do when checking for blood clots is to press on the suspect vein in several places. A healthy vein should be able to squish flat and bounce back to its normal shape easily, whereas a vein containing a blood clot will not flatten when pressed.

The ultrasound scan started with a vein in my neck, then proceeded down my right arm, along the PICC line

At the end of the scan, I was told that there was a clear clot along the length of the line in my upper arm, which would need some attention. I headed back to the day chemo unit to let my nurse know what the outcome was. She took me upstairs to the acute chemo ward. This is where chemo patients would visit after calling the oncology emergency line, if there was an issue that needed immediate attention.

I waited a short while and then saw a doctor who asked me a number of questions and had a look at the sonographer’s report. I wasn’t sure what the remedy would be for my clot, but I half expected that my line would be removed.

Instead, I was prescribed blood thinners: two subcutaneous injections a day of the anti-coagulant medicine Clexane, of which the active ingredient is enoxaparin sodium. Like filgrastim, these were to be self-administered. I’d take the shots twelve hours apart. It wasn’t clear exactly for how long I would need to continue taking them, but the doctor indicated that three months is fairly standard. That sounded like overkill to me, but the doctor said that I’d be able to figure it out with my consultant.

I mentioned to the doctor that I was still getting fairly severe stinging when urinating. For this I gave a urine sample which was checked for infection, but none was present. I wasn’t sure whether the chemo was damaging the lining of the urethra or whether perhaps the stinging was due to the intense expulsion of toxins, but either way it seemed like something I’d just have to put up with.

The doctor sent a prescription down to the pharmacy for me. I left with a sharps bin and Pia and I headed to the collect the prescription, which contained two weeks worth of injections.

The ultrasound and visit to the acute ward and pharmacy had lengthened our stay in Bristol somewhat and it was around 20:30 when we got near home. We collected our younger daughter from a friend’s house on the way home. Then Pia headed out again to collect our older daughter from another friend’s house. I was feeling quite worn out and sick by this point and my arm was hurting. I didn’t waste much time in getting into bed.

My temperature started to rise a little in the evening, which worried me as I was so tired and didn’t fancy another emergency trip to hospital. We checked it a couple of times and it was under 38 celsius. I couldn’t stay awake any longer so let myself drift off to sleep. Later in the night we checked my temperature again and it had gone back down, so panic over.

BEP Cycle 2 Days 4-6

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Friday 28 – Sunday 30 June 2019

I had slept well but still felt thoroughly exhausted on waking. I also had a sick feeling in my stomach and had some feelings of heartburn. The heartburn/acid reflux is not uncommon when on steroids, which is why I’d been given Omeprazole to take for a couple of days. I had that plus Metoclopramide in the morning, but still felt pretty unwell and uncomfortable. I was also quite unsteady on my feet and couldn’t really stay upright for very long.

I knew I was not likely to have been on top form, having just had three days of intensive chemo, but I had kind of hoped that I’d be feeling a bit more stable, particularly since the Glastonbury Festival was on and we had tickets. Had I not been in the middle of chemotherapy treatment, we would have headed to the festival on Wednesday and set up camp, but there was no way I was in a state for camping, even if I had been feeling generally alright. However, we are lucky enough to live about half an hour’s drive from the festival site, so day trips were still a possibility.

On this occasion though, I was in no fit state for a day trip anywhere. I didn’t even feel like I could walk down the garden without it being a huge effort. It was a beautiful sunny and warm day outside, but I was bed-bound.

Pia and the girls got themselves ready and they headed off to the festival for the day and had a nice time. I spent the day napping on and off, not able to shake the sick feeling in my stomach. When I was awake, I did manage to watch some coverage of the festival on BBC iPlayer, wishing I was there myself.

On Saturday, I was feeling much the same. Tired, sick and unstable. I’d had no improvement on the day before and I certainly wasn’t in adequate festival condition. Pia and the girls headed out again and also gave a lift to a friend of a friend who was on his way to the festival.

I was feeling lousy all morning and a lot of the afternoon. Towards the end of the afternoon, I started to feel a little more capable, but still exhausted. I decided to start building a Lego model that I’d been given for my birthday – a replica Volkswagen T1 camper van. Over a few hours I managed to build about half of it, with Glastonbury coverage on in the background. I perked up a little more in the evening and even managed to get outside and water the garden, which was a big improvement on how I’d been feeling in the morning.

After Pia and the girls were home, we stayed up for a while watching the festival performances by the Chemical Brothers and The Killers, which were great. I really wished that I’d been well enough to be there.

I woke up on Sunday feeling much improved. It was a real contrast to the last couple of days. I wasn’t on top of the world, but I felt vastly better – no real sickness and I was much more comfortable on my feet. I decided that I was well enough to make a day trip to the festival, so we got ourselves ready.

I cooked myself a couple of portions of rice and vegetables to take with us. I knew that there would be lots of food available to buy, but being on chemo and potentially immuno-compromised, I was being a bit careful about what I was going to eat and was much happier taking responsibility for my food myself.

It was another beautiful sunny day, not quite as hot as the previous couple of days, but still very warm. We arrived at the festival in the early afternoon and I had to go through the process of showing my ticket and getting my wristband. The staff were quite surprised to see me present them with a full weekend camping ticket on the last day of the festival, but they were thrilled I’d made it when I explained why I’d not been able to come sooner.

We walked through the festival, past a few of the stages and over towards The Glade. Pia and the girls bought some food and we found a spot to sit down and eat. There were so many good food smells about and I’d loved to have been able to try a lot of what was on offer, but I would be sticking to my own food this time. From where we were sitting, the music we could hear from The Glade was quickly drowned out when Baby Metal started their set on the Other Stage.

After we’d eaten, we walked up towards the Pyramid Stage which was absolutely packed for Kylie Minogue. We managed to find a spot, at quite a distance from the stage, and stuck around to hear her. We then headed over to the Kids Zone and the girls did a few activities there while I could hear the Bootleg Beatles playing on the Acoustic Stage next door.

Fun at Glastonbury, Kylie Minogue in the far distance

We wandered back towards the Other Stage as our twelve-year-old was meeting up with one of her friends to see Billie Eilish. She and Pia made their way into the crowd and I took our younger daughter back to The Glade to have something more to eat. Then the two of us had a wander around and spent some time in the Green area, which had lots of fun stuff going on. There was a big playground shaped like a ship, with a spiral slide and rope bridge. There was also some beatboxing going on, which was pretty impressive.

After Billie Eilish had finished, we all met back up and had a look at a couple of stalls before heading to the exit. It had been a nice day out and I’d managed pretty well. I had taken the opportunity to sit down as often as possible, but I was quite pleased that I’d been feeling so much better and had at least been able to get to one day of the festival.

BEP Cycle 2 Day 3

~ andrewamies ~ Leave a comment

Thursday 27 June

I was feeling very tired and a little sick in the morning after having had such a long session the night before. I wasn’t feeling nearly as good as I had a day earlier. I slept on and off during the morning and tried to watch some TV, but couldn’t concentrate on it very well.

Since I’d been disconnected from the IV pump during the night, I’d also noticed something that felt like nerve pain in the back of my right wrist and forearm. This felt like it was being triggered by how I was moving my hand. For example, when trying to insert an earplug into my right ear with my right hand, I would get the pain on bending my finger to push the ear plug in. The pain wasn’t constant though, nor too bad.

Pia arrived around the middle of the day. I had a shower, which was refreshing and we then went for a little walk. I was managing a bit more slowly than the day before, but it was nice to get out.

Feeling a bit rough but out for a walk, exploring an art installation in the park

I was hooked up to the IV pump around 16:00 again and treatment progressed rapidly with nice quick bag changes. Pia and I got away around 19:00 with another party bag of drugs. I wasn’t taking home all of the same things as last time, as I did have a lot left over from cycle 1, but most importantly I had a week’s supply of Filgrastim injections, Dexmethasone, Omeprazole and Metoclopramide.

It was nice to get home. It had been wonderful that Lee had been able to come and stay. The girls had had a great time with her and with her dog who had also come to stay. Lee had planned to drive home the next morning, but instead she decided to try driving in the evening while the dog was a bit more sleepy and would hopefully travel more easily.

Despite having a few toilet visits throughout the night, I slept quite well and it was nice to be back in my own bed.

BEP Cycle 2 Day 2

~ andrewamies ~ 2 Comments

Wednesday 26 June 2019

After waking for the toilet at about 5:30, I wasn’t able to get back to sleep, so I did some meditation and some simple yoga sun salutations. Despite having had a short night, I was feeling reasonably good.

I had a bit of hospital porridge for breakfast and spoke to my mum on the phone for a bit. Then I managed to write a bit more of the blog. One of the nurses also came to change the dressing on my PICC line.

Pia came in at around 12:30. We hung around for a bit and then went out for a walk. We stumbled across some interesting little shops, there seem to be some great hidden gems in Bristol. We also dropped into a Pret A Manger for a bite to eat – Pia had a salad and soup, I just had some fruit and orange juice.

After getting back to the hospital I had a dose of Metoclopramide (I’d had my Dexmethasone and Omeprazole earlier in the day). I was hooked up to the IV pump about 16:00 to start the longest of my chemo sessions.

Hooked up to my IV pump for a long chemo session

Pia and I did a bit of self assessment admin, then tried to watch a video from the Human Longevity Project, but we found it a bit serious and tiring for the mood we were in. Pia left about 19:30 and had a smooth drive home. I tried to knock out a few more blog posts after she had left, but was getting weary as the evening wore on. The last bag change was at around midnight and I had Bleomycin for the final two hours. I tried to sleep a bit while that went in. The session finally finished a little after 2 am.

BEP Cycle 2 Day 1

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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.

Arriving at the hospital for my second stay as an inpatient

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.

Taking my pre-meds:: Akynzeo and Dexmethasone

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.

Playing a little pool while hooked up to the IV pump

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.

A private room was quite a surprise!

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.

This TYA room even comes with a Banksy print on the wall

BEP Cycle 1 Day 2

~ andrewamies ~ Leave a comment

Wednesday 05 June 2019

After something of a patchy sleep, I woke about 6:30 for the toilet. I lay awake for a little after that then sat up sometime soon after 7:00. The nurses did their handover about 8:00 and I had my blood pressure, pulse and temperature taken. I was offered some breakfast, but I settled for a banana which I had with me and a cup of green tea.

After that I got to meet the chap in the bed next to me called Dave. He’d had a rough day the day before, which is why I hadn’t already had the chance to speak to him. He was a really nice guy though who was very chatty when he was able. It’s nice to have someone to talk to.

I wasn’t feeling too bad in the morning, but very tired and a bit fragile.

I had an appointment for a lung function test at 10:15, so I got myself washed and dressed and headed off to another block of the hospital. The lung function test took about 20 minutes and involved breathing in and out of a monitored tube which had a snorkel-like mouthpiece. One exercise looked at overall lung capacity and strength of exhalation, and another on gas transfer time. Both tests came out with fairly normal results. I expect that I will perform these tests again at the end of my chemotherapy treatment to see if I’ve deviated from this baseline at all. Bleomycin can affect the lungs, so I imagine it’s common for patients to experience some short-term degradation.

I was feeling quite alright after that, so I headed up to the hospital restaurant on the top floor and found a table next to a sunny window to sit down at. I had a smoothie and some green tea, and I pulled out my laptop and made a start on writing this blog (at the time of writing, I’m almost three weeks behind!).

I went back to the ward after a bit. Pia came to meet me about 13:00. She’d brought food, so we ate a little. Around 14:00 the nurses gave me some Dexmethasone (steroids), Omeprazole (which helps with acid reflux whilst on steroids) and Metoclopramide (an anti-sickness drug). I also had the dressing on my PICC line changed, as it was looking a little messy from having been put in the day before. With the PICC line, I was given a PICC Passport, which is a log book that is written to each time the PICC is cleaned, dressed or altered. Cleaning and redressing needs to be done every week. This works out to be quite easy for me, as I’ll be having either inpatient or day chemo every week anyway, so no extra trips to the hospital will be necessary.

My brother, Peter, who had come to look after the children while I was in hospital and Pia was spending a lot of time with me, had decided to take them to Airhop, a trampoline park in Bristol, during the afternoon, so he and the girls dropped into the hospital on their way. Pia and I met them at reception and we went for a walk into Bristol. I don’t know Bristol very well, so it was nice to have a wander around. We had a look around an indoor market and stopped to grab a cup of tea (green for me) before heading back to the hospital and saying goodbye.

Despite being quite tired, I managed the day quite well. No pain or nausea. I got started on my chemo session around 16:00. Today’s menu was:

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
Bleomycin – 250 ml over two hours

So it was basically the same as for day 1 but with the addition of Bleomycin.

The bag changes were a bit slower than the night before and the session finished after 3:00 am. I was quite knackered by the time Pia left around 20:00. I started watching a film, but didn’t get very far before I could no longer concentrate. I managed to snooze a bit during the last couple of bags, which was good. After that, I managed to sleep quite solidly for the rest of the night (between toilet trips).

BEP Cycle 1 Day 1 – Treatment

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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

Chemo in progress. Bags containing chemo drugs are always covered in a green sleeve. This indicates to staff that the fluid is a chemo drug and needs to be treated carefully. It also helps to protect some of the chemo agents which are light sensitive.

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.

I found it quite amusing that my IV pump appeared to be delivering “Drug X” into my vein!

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!