BEP Cycle 2 Day 1

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 16

Wednesday 19 June 2019

I woke up with quite a bit of hair on my pillow this morning. It’s getting easier to pull it out each day. A fair bit more came out while showering and drying my hair (gently), after which there remained a layer of loose detached hair on the surface of my fixed hair. Hairs from that layer were inclined to fall everywhere, making washing and drying my face an extended activity.

I had another day chemo session in the afternoon, so Pia and I took another journey to Bristol. The session went fairly swiftly. I had my PICC line redressed and some blood was taken for a full blood count. Then I had half an hour of IV saline, some hydrocortisone and then half an hour of Bleomycin. It was finished off with a bit more saline.

Second day chemo in progress

The nurse looking after me was called Susie and she had a lot to do with the Penny Brohn charity which I had learned about from Julie the day before. Susie also had a lot of knowledge on more holistic therapies and dietary practices that could help in treating cancer, so it was great to talk to her. She’s the only person in the NHS we’ve spoken to so far that has mentioned anything other than surgery and chemo. Anything else seems taboo.

My chest felt a bit funny on the way home, which it had also done after the previous week’s day chemo. I’d been slightly nervous as to how the evening would pan out after having received Bleomycin in the afternoon, but fortunately I has no fever and slept well.

BEP Cycle 1 Day 9

Wednesday 12 June 2019

Today was my first day chemo session and my appointment was for 14:30. We arrived on time and found that due to a lack of available chairs, I was having my infusion in the Teenage and Young Adults (TYA) day chemo unit. The unit was quite pleasant, as was the nurse looking after me.

Infusing in the TYA day chemo unit

It had been a week since my PICC line had been serviced, so I first had that cleaned and redressed. Then I was started off with some saline and hydrocortisone before having Bleomycin infused for half an hour. It all went pretty smoothly and we left within two hours of arriving, which was nice.

The satnav took us home via a completely different route to normal. It was very picturesque, but I’m not sure that it was any quicker. I started feeling quite sleepy on the way home.

After dinner I started feeling shivery and decided to get into bed. It wasn’t long before I was shaking somewhat uncontrollably and my temperature was spiking again, up to 38.5 C. It felt like a repeat of two nights earlier and I was dreading having to spend another exhausting emergency night in hospital. At least it was a little earlier in the evening, a bit after nine rather than eleven.

I called my oncology team and they checked the bloods they had from my day chemo visit a few hours earlier. Neutrophils were good at 2.07. We decided that I would try to ride it out, but would come into the hospital if things got any worse during the night, or if I still had a raised temperature in the morning. Fortunately I got to sleep and the fever wore off after a couple of hours. It looked to be a typical reaction to the Bleomycin.

So no emergency on this occasion. Instead I managed to get some decent sleep which was very welcome.

BEP Cycle 1 Day 3

Thursday 06 June 2019

I’d slept better after day two than after day one. However, I was feeling more exhausted in the morning. I also felt uncomfortable in the tummy. It wasn’t proper nausea, but it was a feeling of sickness. I dozed a bit throughout the morning.

I was asleep when Pia arrived around midday. When I noticed she was there, I tried to get up a bit but I wasn’t feeling so good. I slept for another hour or two, then we had something to eat. I started to feel a bit better after that.

I got dressed and we went outside for a walk. We found a beautiful garden which is part of the local university. It was really nice to walk around and see the different plants and art installations. It was also nice to get some fresh air and a bit of sunshine. We stayed out for about an hour, then I returned to the ward and had a shower to be fresh for the final chemo session of my initial stay as an inpatient.

So how does one manage to shower without getting one’s PICC line wet? The hospital didn’t provide a solution for this, but fortunately I’d found one in advance: A LimbO Waterproof Protectors PICC line cover. This is a waterproof sleeve which covers the upper arm and forms a tight seal at both ends. It doesn’t let any moisture through at all. If you’ll ever be needing a PICC line for any reason, get one of these as well. It makes showering a much easier experience.

My day three chemo session was much shorter than the previous two days. In advance I took some Dexmethasone, Omeprazole, Metoclopramide and also some chewable calcium carbonate, as calcium had come up as being a little low in my latest blood work. The chemo ran smoothly and lasted around two and a half hours altogether:

Etoposide – 500 ml over one hour
Etoposide – 500 ml over one hour
Saline flush – 10 minutes

After that, I was given a party bag of drugs to take home and one of the nurses talked me through it. It contained:

Dexmethasone (steroids) – to take for three days post-chemo
Omeprazole (for acid-reflux) – to take with dexmethasone
Metoclopramide (anti-sickness) – to take as required up to three times per day
Chewable calcium carbonate – to take for two days post-chemo
Filgrastim (pre-filled syringe to stimulate white blood cell production) – to inject daily for seven days post-chemo
Benzydamine Hydrochloride (mouthwash for ulcers or other mouth irritations) – to take as required
Docusate Sodium (for constipation) – to take as required
Loperamide Hydrochloride (for diarrhoea) – to take as required

I was pleased to be on my way home after that. I was also feeling a lot better than I had been during the morning, though still tired. The drive home was nice and smooth. I’d expected, given the chemo fluids and all the water I’d been drinking, that I might need a toilet stop along the way (and I’d taken one of the hospital’s cardboard bottles, just in case!), but fortunately I made it all the way home with my bladder still intact.

It was great to be home with Pia and the girls. Peter had also cooked up a splendid risotto, which was delicious and became something of a craving for me over the next few days. I happily got into bed soon after eating and slept well all night (only four toilet trips).

BEP Cycle 1 Day 2

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

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!

BEP Chemotherapy

BEP Chemotherapy is the usual treatment for germ cell cancer patients who have experienced metastasis. The initials stand for the three chemotherapeutic agents used:
Bleomycin
Etoposide
Cisplatin

These drugs are given individually as intravenous infusions. A typical treatment cycle lasts for 21 days and the drugs are given on the following schedule:

Day 1 – Etoposide and Cisplatin
Day 2 – Etoposide, Cisplatin and Bleomycin
Day 3 – Etoposide
Day 8 or 9 – Bleomycin
Day 15 or 16 – Bleomycin

The schedule can vary slightly from that above depending on the patient and treatment centre. Three consecutive cycles are usually prescribed, but four cycles are used in some cases.

There are several side effects that patients might experience during the treatment cycles including: fatigue, headaches, nausea, appetite loss, hair loss, tinnitus, numb toes and finger tips, changes in taste, greasy skin, brittle nails, shivering, fever, mouth ulcers and cold and flu-like symptoms. Some of these can become long-term side effects, but the occurrence of those is fairly low.

There is also a heightened risk of infection in chemotherapy patients, as the treatment tends to lower one’s white blood cell count, particularly the neutrophils which are the body’s first line of defence against infection. For this reason, chemo patients need to keep good hygiene practices and get checked out urgently if they start experiencing high temperatures or other signs of infection.

The Macmillan Cancer Support website has a page explaining more about BEP chemotherapy.

My Journey Through Cancer

Thanks for visiting my blog!

I was diagnosed with testicular cancer in September 2018. In my run-up to starting BEP chemotherapy in June 2019, I read a number of blogs written by other guys who had been through the same diagnosis and treatment as myself. Although they had a number of common threads, each of their experiences were unique. They helped me to have a clearer idea of what may lie ahead in my journey. I thought I would start writing about my experience so that it too might be of benefit to others who find themselves in the same situation.

Start here to read about how my journey began, and then follow through the posts from oldest to newest to see how it progressed.

Also check out my Chemo Tips and Links to further cancer information and blogs.