BEP Cycle 3 Day 21

Monday 5 August 2019

As it was the last day of cycle 3 (and indeed the last day of my entire chemo schedule!), I had hoped that I would have been feeling as good and active as on the last days of cycles 1 & 2. However, I was actually very tired and had some feelings of sickness as well. I’d woken quite early and couldn’t get back to sleep which didn’t help. I ended up staying in bed for most of the day and napped a fair amount.

So the last day of my nine weeks of chemo was not that exciting, but it was great to have the girls back from Finland and spend some time with them, and Pia made some excellent roast potatoes for lunch (home grown potatoes) and a really good mushroom risotto for dinner.

Cycle 3 had been much tougher than cycles 1 & 2. Side effects had tended to be stronger and I had a lot more tiredness and sickness. I was very glad that I didn’t have to start another cycle and hoped that all the drugs I’d loaded into my system over the past couple of months were having the desired effect.

Here’s a quick recap of what I’d experienced during cycle 3:
– Tiredness was more intense and more common than in previous cycles and I’d been sleeping a lot more
– Headaches were still occasional, but stronger than previously
– Feelings of sickness had become regular and I’d been taking Metoclopramide for it most days
– I’d had some proper nausea this cycle, though I’d not vomited at any point
– Bouts of tinnitus had been longer and stronger, but didn’t cause me any real bother
– I had a slightly raised temperature after having Bleomycin on day 9, which I’d also experienced in the two previous cycles, but my temperature didn’t exceed 38C
– As per cycles 1 & 2, I lost my voice a little a couple of days after my inpatient stay, but it was not as obvious as on cycle 1
– The heavy feeling in my chest had gotten worse, but I was still able to breathe normally
– The cough I’d developed during cycle 2 had gotten progressively worse and I was struggling to get through anything more than a short sentence without having to cough
– The nerve-like pain in the back of my right forearm and wrist disappeared after my PICC line was removed
– I’d not had any further discomfort in my right upper arm, so I imagined that the blood thinning injections must have been doing their job. The downside of the injections was that they were less comfortable to administer than the Filgrastim shots, and I was getting a very bruised, swollen and lumpy belly.
– The stinging in my urethra had continued unabated and felt quite bad more frequently. I was trying not to let it bother me, but it was not exactly easy to ignore.
– My eyebrows had been gradually thinning out and although I’d not lost them, it was clear towards the end of cycle 3 that they were nothing like the dark bushy brows that I usually had. Likewise my eye lashes had thinned out significantly and there were some gaps of up to around 6 mm between some individual lashes.
– The nails on my thumbs, index and middle fingers were noticeably discoloured and ridged. It was sore to press on or pull with the finger tips, so there were a number of simple tasks like opening tub lids which became difficult. The finger tips were not numb or tingling though, which is what some people experience towards the end of a BEP chemo schedule.
– I’d had some unusual and sudden chest pain which I didn’t know the cause of
– I’d found it increasingly more difficult to be out in the sun on hot days. Even being in a car when it was hot outside was quickly tiring and uncomfortable.

Cycle 3 had been rough and I was glad to have gotten through it. With my full chemo schedule now over, I was ready to start rebuilding and repairing. It was great to be at this point. I didn’t know how long it would take to start feeling normal again, but I’d take each day as it comes.

BEP Cycle 3 Day 17

Thursday 1 August 2019

I was feeling good when I got up. I took it fairly easy during the morning, spending time writing the blog and speaking to my mum on the phone. We headed out just after 1 pm. We dropped by a local shop to buy some chicken feed, but unfortunately that was closed when we got there, so we continued on to Bristol.

It was a nice day out. We arrived at the hospital a little early, so we first visited the pharmacy to collect my prescription from the day before: sixty injections of Clexane that would keep me going for a month. I was hoping that my consultant would let me stop the injections early, but I didn’t know yet if that would be the case. I’d ask at my next appointment in a week’s time.

We walked up to the TYA day chemo unit and just had to wait a few minutes for the nurse to be ready for me. When she was ready, I sat down and she explained what she was going to do.

My PICC line undressed. The line is running through the orange clip and the clip is embedded in my arm with two metal hooks.

She removed the dressing from my line. Then she took the cap off of the orange clip.

The line removed, clip remaining

With the clip free of its cap, the line could then be smoothly pulled out of the vein. This caused quite a funny sensation in my arm, not uncomfortable, but amusing. It was interesting to see just how long a piece of plastic had been occupying my vein.

Cutting the clip into two pieces

After that, the clip was cut in half lengthways. Each half of the clip had one hook embedded in my arm. The idea then was to twist each half of the clip in such a way that its hook would manoeuvre itself comfortably out of my arm. However, that was easier said than done. The nurse tried several approaches, but the hooks were not coming. She said that the hooks can sometimes become tangled (with each other) and she was a little concerned about trying to force them out in case she did me any damage. In the end, she called on one of the PICC team to help, the same person who had put my line in almost two months earlier. After a good look, she pressed down with some gauze pads on the site of the hooks and then yanked them out one after the other. They came quite easily using that method and only caused a small moment of pain, a bit like ripping off a plaster.

The metal hooks which had held the clip in place

The amount of bleeding from the wound was very small, but I was to keep a dressing on it for a couple of days. I was also told not to use my arm in any vigorous way for a few days, not to swing it around or lift anything heavy while the wound was healing.

Treatment over and line out, it felt good to be finishing my chemo schedule

It was a great feeling to have the line out, even better than when I’d finished my last chemo session the day before. I felt so liberated, which was elating! I knew I would still have the chemo drugs in my system for a while and that I had a lot of recovery to get through, but having the PICC line out made the treatment feel somewhat complete.

We drove home and I set about preparing some dinner while Pia planted some seedlings in the garden. I made another jackfruit dish, this time with a more spicy sauce. We ate it with spiralised courgette from the garden. It turned out very nice, so I’ll have to make it again.

Pia went out to a yoga class in the evening. I wrote bit more of the blog and then walked to meet her after the class. When we got home I was very tired. I tidied up the kitchen a bit and then went to bed, falling asleep straight away. It had been an exciting day and a wonderful experience to be at the end of my treatment.

BEP Cycle 3 Day 16

Wednesday 31 July 2019

I was feeling quite good on waking, but still felt that I needed to take an anti-sickness tablet, so I had a dose of Metoclopramide. This afternoon was to be my final day of chemotherapy treatment, one last dose of Bleomycin. My PICC line was also due to be taken out following the chemo, which I was very pleased about. Although it had been a convenience during treatment, it was a bit of an obstacle at times, had given me a blood clot for which I had to take uncomfortable injections twice a day, and I would be glad to be rid of it.

I spent most of the morning writing in my diary and doing a few other bits and pieces. I also spoke to my sister for a while on the phone. At some point during the morning, I was sitting in the front room and Pia came rushing downstairs as she’d heard a frantic clucking in the back garden. She ran to the back door and I went to the front. When I opened it, I saw a guilty looking ginger cat on the driveway, next to the path at the side of the house. The cat quickly cleared off once it saw me and I went out onto the street to see if Lucy had been chased there. I walked up and down but couldn’t see her. When I came back to the house, I went to the back garden and Lucy was there. She’d been chased from the end of the garden, over a fence and all the way up to the house where she had taken refuge on the kitchen window ledge. She was looking quite shaken, but she let me pick her up and carry her back down the garden, which is very trusting of her as she doesn’t usually like being handled. We closed all three chickens in the run for a while. As soon as we did, we could see that the ginger cat had re-emerged from one of the back corners of the garden, so we scared it off.

My chemo appointment was for 15:00, and we headed off about 13:30. The drive was pretty easy and we were there 20 minutes early, so we dropped into the M&S at the hospital’s main entrance to get something to eat (we’d had a late breakfast, but no lunch).

Happy to be getting my final chemo treatment over and done with

The treatment all went smoothly and I was all smiles, glad the be on my final day of treatment. Unfortunately, I was not able to have my PICC line removed as I was on blood thinners. There needs to be a minimum gap of twelve hours between taking anti-coagulant medication and having a PICC line removed, and I’d had my last shot of Clexane just seven hours earlier. If I had known, I’d have skipped my morning injection, but nobody had told me about this requirement. The nurse who I’d had for my first day chemo treatment, in the TYA (Teenage and Young Adult) day chemo unit, happened to be in the room and she said that she could take the line out for me the next day if I could come back around 3 pm, so we agreed to do that. Before we left, my chemo nurse also sent a prescription down to the pharmacy for me to collect another 30 days worth of Clexane injections. We decided to collect them when we returned the next day.

We stopped at the supermarket on the way home to get a couple of things. I then whipped up a fresh zhoug sauce to have with the left over falafels from the night before.

It was great to have the chemo over with, very elating. I now just couldn’t wait to have my line removed – that would make it feel more complete!

BEP Cycle 3 Day 10

Thursday 25 July 2019

I woke feeling very rough, similar to the day before, only this time I had a headache as well. I usually tough it out, but instead I decided to have some paracetamol and ibuprofen for the headache. This was only about the third time I’d resorted to using pain killers during chemo, each time being for headaches. I prefer to only take something if I really need it.

It was very hot again and going out in the sun for more than a minute or two at a time was too much for me. Mind you, I was already feeling quite unstable in the shade and couldn’t stay on my feet for long. I spent the day in bed, again with alternating periods of sleep and wakefulness. I was quite glad that I didn’t have to go out anywhere today.

When I was awake and feeling capable, I tried to learn an alternate method for solving the Rubik’s Cube. The traditional, or easiest, method for solving a 3×3 Rubik’s Cube is to do it in layers: the bottom, the middle, then the top. I could do that, but I wanted to learn how to solve it by correctly placing all of the corners first, then the remaining pieces. Learning such a process usually involves a lot of repetition in order for it to sink in and become second nature. It never seems very easy to begin with, but with a bit of perseverance it doesn’t take too long to understand the moves and become fluent. I had an initial mess about with it at least and started to learn some of the preliminary steps.

I was feeling marginally better in the evening and came downstairs to eat. We sat on the sofa and started watching a film. We also talked to an old friend who lives in the USA, who we’d not been in touch with for a little while. That was really nice.

I was still feeling pretty tired and unwell when going to bed. I also noticed that the nail on my left thumb had started to discolour like those on my left index and middle fingers. All of my other nails were ok.

BEP Cycle 3 Day 6

Sunday 21 July 2019

I woke feeling a little better than the day before, but I was still very tired and had a sick feeling in my stomach. I took some Omeprazole and Metoclopramide. I found that I couldn’t sit upright or stay on my feet for very long at a stretch and I needed to spend most of the morning lying down, flat or with my head slightly elevated. I mostly stayed in bed, though I did manage to use my laptop a little.

The girls would be heading off with their grandmother in the afternoon to spend two weeks in Finland, leaving Pia and I home alone to see through the remainder of my chemotherapy. They spent a lot of the morning with Pia getting their bags packed. The first leg of their trip would be a train journey to London, where they would stay for the night. They would then fly to Finland the following day.

We ate lunch around 1 pm. I was a bit more active by this point, though still not feeling good in any way. We got in the car and headed to the railway station around 3 pm. We arrived in good time and saw the girls off. It was a strange feeling to be without them. It was the first time that they would be away from us for more than a night or two at a time, and the first time they’d be travelling without either of us. We had every confidence that they’d get on ok for two weeks, but it was quite a new experience for us and a bit emotional.

I was feeling sick and exhausted on the way home, worse than I’d been feeling at lunchtime. I think the journey to the station might have been a bit much for me. I had to lie down and rest on getting home.

We got word shortly after that the girls’ journey had been delayed after someone had jumped in front of their train. The train was held for a long time and there were apparently several police cars, ambulances and a helicopter present. Eventually, after plenty of free drinks & biscuits and one change of train, Pia’s mum and the girls arrived in London about three hours late. Quite a drama, but good that they made it and didn’t get turned back. I hoped the experience wouldn’t give the girls any bad dreams.

On the last day of school two days earlier, my twelve year old had brought her Rubik’s cube home, which she’d been keeping in her desk. I hadn’t played with it for a long time, so I spent a little bit of time in the late afternoon messing about with it, trying to remember how to unscramble it. It all came back to me after a short while and I was able to solve it intuitively. It’s quite good fun.

Later, Pia and I settled down to watch a film before bed. As well as having a lot of fatigue and sickness during the day, I’d noticed more tinnitus. It was still faint, but more persistent than previously. On top of my Clexane injections, I was also on Filgrastim injections for a few days, so a total of three injections per day. I find the Clexane shots to be more painful than the Filgrastim, and my belly was getting quite bruised with all of the daily injections. Still, it was just temporary and the most important thing was that I was working my way to better health.

BEP Cycle 3 Day 5

Saturday 20 July 2019

I was exhausted and dizzy, and had a sick feeling in my stomach on waking. I took some Omeprazole and Metoclopramide before my morning shot of Clexane. I stayed in bed, sleeping or lying still. My stomach was very uncomfortable, but I didn’t have any proper nausea.

Pia brought me some porridge with organic blueberries, strawberries and raspberries. That helped to settle my stomach a little. I took my steroids at the same time.

Everyone else went out for a while and I kept on sleeping. I perked up slightly around 2 pm and got up to wash some organic grapes to snack on. I stayed in bed, but after a while decided to try a bit of Lego building. I got out the half-built VW camper that I’d started three weeks earlier. I managed to get it finished, slowly completing the build over the next four hours.

A really nice Lego VW T1 camper, lovely model

I came downstairs for dinner. Pia had made risotto, knowing from our experience of the last few weeks that I would probably be craving it. She was right and it was delicious! I was feeling quite out of it by the time I’d finished eating. We took a little stroll in the garden after that, which was refreshing. Before going to sleep for the night, I watched a little television with one of the girls.

I’d felt pretty rough all day, but it was good to have managed to do a bit of Lego and to have gotten out of bed for a little while.

BEP Cycle 3 Day 4

Friday 19 July 2019

I was feeling very lethargic and a bit sick in the morning. I just wanted to lie still. I had Clexane, Omeprazole and Metoclopramide around 9 am. I turned down hospital breakfast when it was offered, eating a banana a bit later on instead.

I spent most of the morning either sleeping or lying very still, not feeling good at all. Pia arrived around 13:00. I continued sleeping for a while.

Lying still, feeling tired and sick

I couldn’t handle going for much of a walk. I did however get up and dressed and we walked down to the hospital’s main entrance to get some food from M&S. It was much more of an effort than the day before, but this was also the case on the third day of inpatient treatment in cycles 1 & 2, so I was getting kind of used to it.

We came back to the ward and I had my steroids. We ate a little and then I was hooked up to the IV pump for my final inpatient chemo session. It took just a little over two hours to complete. We headed home after that with another party bag of drugs, this one including 30 Clexane injections to keep me busy for the next 15 days.

Starting on my final inpatient chemo treatment – nice to be getting towards the end of it all

It was nice to get home. Pia’s mum had been a great help in looking after the girls all week. As it had been the girls’ last day at school for the year, they had cleared their desks and brought home lots of bits and pieces including all of the artwork they had done throughout the year. We had a look through some of that during the evening, which was nice. Very impressive!

As I’d been feeling so tired and unwell all day, I didn’t waste too much time in getting to bed. I slept well.

BEP Cycle 3 Day 3

Thursday 18 July 2019

I woke around 5:20 and couldn’t get back to sleep, despite feeling very tired. For around ten minutes I got a stitch-like pain in my right side which I hadn’t experienced before. It didn’t cause too much distress though and went away fairly easily.

A nurse came in quite early to check my blood pressure, temperature, etc, and to take some blood from my PICC line – no blockages this morning! My mum called a bit later and I spoke to her for a while. After the night shift nurses handed over the day shift nurses around 8 am, I was brought my morning Clexane injection, Metocolopramide and Omeprazole.

One of the doctors wanted me to have another chest x-ray, so my nurse called ahead and arranged it with the radiology team. I got myself up and dressed and headed down one floor for the x-ray. It was all pretty quick. I was feeling quite tired and fragile, but I coped ok.

I spent the next few hours sitting in bed, reading a bit and trying to progress with writing the blog, which I was about three weeks behind with. I had visits from a nurse, who pricked my finger to check my blood sugar levels, and a doctor, who just came to see how I was getting on.

I had a bit of hospital food for lunch: broccoli, peas, carrots and potatoes. Pia arrived not long afterwards. It was a beautiful day and we went for a walk up to the university gardens and sat there for a while. We then walked a bit further and dropped into a couple of shops before heading back to the ward. I was feeling quite a bit more capable than I had been in the morning.

Heading out for a walk. I was staying in a room just to the right of the top window in this picture.

We were back by 16:00. I was given my Dexmethasone dose for the day and was hooked up to my IV pump around 16:30 for the day’s chemo, which consisted of:
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

Pia and I ate a bit. She had brought me some rice and vegetables from home. Some hospital food also arrived, so I had some of that too: vegetable pie, potatoes and some other veg. We watched a film together and then Pia left shortly after 19:00.

The second day of inpatient chemo is always a long tiring session. I was quite tired but spent most of the evening awake, trying to add to the blog. I was utterly exhausted by midnight and tried to sleep as the final two-hour bag of Bleomycin was being infused. I was disconnected from the IV pump a bit after 2 am, and slept well after that.

BEP Cycle 3 Day 2

Wednesday 17 July 2019

I felt pretty decent waking up. I made a glass of citrus juice and ate a banana. I was going to call the hospital at 8:30, but they called me first to ask how soon I could come in. Given that I had a lung function test booked for 13:30, chemo wouldn’t be able to start until after that. We decided that I’d come in around midday so that they could take some blood and things, then I’d go for the lung function test.

We headed off about 10:30 and had a fairly easy drive in, except for some delay in Bristol due to an Extinction Rebellion protest blocking a busy intersection near the hospital. We found a parking space in the first place we looked, which was good. Parking is generally quite difficult around the hospital.

When I got up to the ward, I found that they had given me the same private room that I’d had in cycle 2, which was a nice surprise! The nurses got started by trying to take some blood from my PICC line, but nothing was coming. It seemed that there was a blockage in my line, so they took blood via a needle from my other arm instead. I was given a shot of fluid into my PICC line to resolve the blockage.

With a blockage in my PICC line, blood had to be taken the traditional way from my other arm

Pia and I wandered down to another part of the hospital for my lung function test. It was basically a repeat of the test I had done six weeks earlier. The physiologist said that the results looked fairly normal and quite close to those in my baseline test. I’d largely expected that, as despite having a heavy chest and a lot of coughing, I was still able to take full deep breaths without any problems.

Breathing in and out of a tube as part of the lung function test

On the way back to the ward, we stopped at the little Marks & Spencer store to get some food. Once back, I had my PICC line redressed and I was given my premeds: Akynzeo and Dexmethasone. I was also visited by one of the germ cell oncologists who I had not met before. He had a good bedside manner and was pleasant to talk to. When I mentioned to him how I could trigger the nerve pain in my right forearm by pressing on my ear, he could not think of any explanation, but he said that cisplatin can sometimes affect nerves in an unusual way.

Chemo got started around 16:30

I ended up having to wait a while for chemo to get started. I was finally hooked up around 16:30 for the usual day 1 routine:
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

Pia and I watched a couple of films as the treatment got going. I was also brought some hospital dinner consisting of lentil pie, peas, carrots and potatoes. Pia left a bit after 19:00 and had a fairly easy drive home. I was feeling pretty exhausted by this point, but listened to a couple of podcasts and watched a docu-film while the treatment progressed. One of the nurses brought me my evening Clexane injection around 21:00.

As per cycles 1 & 2, I was making a lot of toilet trips and filled several bottles for the nurses to take away. I was finally detached from my IV pump shortly after 1 am and went to sleep quite easily after that.

BEP Cycle 3 Day 1

Tuesday 16 July 2019

I called the hospital at 8:30 and they said that they already had a bed for me, which was great! They didn’t know what time I should come in, just at that moment, so they said that they’d call me back when they knew when my chemo drugs would be available.

I heard back from them around midday. Unfortunately my drugs were not going to be ready. Somehow my drug schedule had become disconnected from my appointment schedule and the pharmacy had me down for starting my cycle 3 treatment a day later. So someone at the hospital had screwed things up. I then heard that I was supposed to attend an appointment for a lung function test at 2 pm, but nobody had let me know about it and I wouldn’t have been able to make it by that point anyway. The lung function appointment was rebooked for the following day and I would have to call the chemo ward again the next morning to agree with them what time to come in.

I was quite put out to have been pushed back a day for some unknown reason. Had this happened in cycle 1 or 2 it would have messed up our child care arrangements, but fortunately with Pia’s mum staying for the entire week, we would be able to cope. The only shame would be that Pia would now miss the girls’ last day of the school year on Friday.

I was quite tired during the day and napped for a while in the afternoon. I felt a bit more phlegmy than previously, but probably coughed a little less overall than the day before.