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 9

Wednesday 24 July 2019

It was a very hot day, possibly the hottest of the summer so far, and I was feeling exhausted, sick and unstable – not good at all. The chemo from my latest inpatient stay had really hit me hard, much more than either of the previous cycles. I tried to sit outside a couple of times during the morning, but I didn’t last more than a minute or two in the heat before feeling quite unwell and needing to lie down in the shade.

Sitting outside in the shade, not looking too bad in the picture but actually feeling pretty horrendous

One thing that sometimes helps with the feeling of sickness is eating something solid. As on many other mornings, Pia made me some porridge with organic berries and coconut milk, and that helped to settle my stomach a bit, for a little while at least.

I had an appointment for day chemo in the afternoon. Since my drug schedule had recently been messed up, having been a day behind my appointment schedule last week, I wanted to ensure that my Bleomycin for the afternoon’s session had been prepared for me before I made the trip to Bristol. My specialist nurse was off, so I couldn’t get hold of her. I tried to call the day chemo unit several times, but nobody was answering there. Eventually I spoke to someone from the chemo appointments team and they passed me onto one of the pharmacists. The pharmacist told me that I should be fine to come in for 3 pm, but she’d double check that my drugs had been prepared and would call me back if there were any issues.

I was feeling really rough and wasn’t coping too well. I really just wanted to curl up into a little ball and disappear for a while. However, I managed to take a shower, which I absolutely needed, and I got dressed.

Just before we left, I had a call from the pharmacist to say that there was actually a problem and that my drugs had not been prepared. It seemed that the dates on the drug charts in my patient notes had been updated, but this had not had the knock on effect of updating the pharmacy’s schedules accordingly. So twice now my chemo drugs had not been prepared in time for my appointments – I was glad I’d called ahead to check. Fortunately, the pharmacist said that she could have the Bleomycin prepared for me on an urgent basis, so I could still come in. If it wasn’t ready for 3 pm, it would be sometime soon after, which was fine given that it wouldn’t normally be infused until almost an hour after my appointment began.

I felt pretty awful during the car journey, worse than on any other journey we’d made during my chemotherapy. The heat didn’t help, even though we had cool air pumping through the vents. I started to feel what was probably the closest to proper nausea I’d had so far. For the first time during my chemo treatment, I felt as though I might actually have to vomit and held onto a plastic bag, just in case.

Pia dropped me off at the BHOC entrance, as I wasn’t going to be able to walk very far and we usually had to park a fair distance away. I walked up to the day chemo reception desk where I had to lean on the counter and clearly must have looked a wreck, as the receptionist had to ask how I was feeling and if I was ok. I sat in the waiting area for a few minutes, most of the time leaning forward with my elbows on my knees.

When my chemo nurse came to collect me, I told her how horrible I was feeling. As I wasn’t feeling good, she wanted to check a few things before starting any treatment. She took my blood pressure, pulse and temperature, which were all ok, and she asked me a number of questions. She also wanted to make sure that I felt capable of seeing through the day’s session before we commenced. I just wanted to get it done. I had my PICC line redressed and some blood was taken to check my full blood count. Everything on the FBC came back looking alright.

Sitting back as still as possible with my eyes closed during chemo

It was cooler inside the hospital and I started to feel a bit less unwell after being sat there for a while. After Pia arrived, having parked the car, I was hooked up to an IV pump and got started on some saline and hydrocortisone. I spent most of the next hour with my eyes closed, not quite asleep, but not far off. I just sat back as still as possible. After half an hour, I started the Bleomycin, which infuses over 30 minutes. Then I had 15 minutes more of saline, after which I was able to leave.

By this point I was feeling much improved on when I’d arrived, but still pretty poor. Fortunately it had cooled down a little outside. I waited by the hospital entrance while Pia fetched the car, then we drove home. The drive home felt a lot easier than the earlier drive to the hospital.

When we got home, I lay down in bed. I’m not sure that I actually slept, but it was close enough. I came downstairs in the evening and we ate on the sofa before going to bed.

As per day 9 of cycles 1 & 2, my temperature did rise a bit during the evening, a known side effect of Bleomycin. When I went to bed, it was about 37.5 C, having risen from closer to 36 C. It then went up to almost 38 C, but had come down again when we checked it later during the night (Pia had set alarms so that we could wake and check it every so often). Other than for waking to check my temperature, I slept quite well.

This had been the hardest day so far and I’d felt awful all day, but particularly during the trip to the hospital. I think this was all the cumulative effect of the chemo drugs in my system, really hitting me hard. I did wonder how long this would last and how much worse it could get, but it was no good dwelling on such things. I’d have to take each day as it comes.

BEP Cycle 3 Day 7

Monday 22 July 2019

I woke around 5 am and couldn’t get back to sleep, so I got up shortly after 6. I wasn’t feeling too bad. I had a look at the blog for a bit, until Pia got up. I had a BodyTalk appointment at 10, so after having my morning shot of Clexane, I had a shower to get ready for that. I also shaved, not that I had any stubble, but I did have a number of wispy white hairs sporadically protruding from around my chin.

I wasn’t feeling so good after the shower, a bit sick and sluggish. I walked 15 minutes in the heat to get to BodyTalk and I was thoroughly worn out when I arrived. I felt dizzy and was glad to sit down. The session went well and afterwards I thought I’d try walking home, knowing that I could always call Pia if I needed her to collect me. I managed, but it felt like quite a struggle towards the end. I got home shattered and feeling ill and I just needed to lie down.

Pia brought me some porridge after a while, which went down well. After that I slept for a bit and spent the rest of the afternoon in bed. I was feeling really tired and unwell. My stomach felt as though it wanted to be left alone completely while at the same time would have liked to have been filled with something solid. It was very uncomfortable.

Tinnitus was quite pronounced, but not much bother. More annoying was that my mind was repeatedly attaching to a little thought bubble that was blasting out Going For Gold by Shed Seven. Not that it’s a bad song, it was just hard to shake.

Pia spent most of the afternoon working, but she came up a couple of times and we chatted about lots of things like holiday possibilities, whether we should get a dog and also about getting some new chicken friends for Lucy. She went to the supermarket around 18:30 and after that she made some pea pasta with pesto and a load of fresh toppings: grated courgette from the garden, basil, spinach, tomato, olives, artichoke, pine nuts, chilli flakes, ground cashew nuts, beetroot, cucumber, avocado, salad leaves and black pepper. That went down very well and I could easily have eaten twice as much. I’ve certainly managed to keep a good appetite throughout my treatment.

The girls called us from Finland in the evening once they had made it to their destination. It sounded like their journey had gone well.

It had been quite a rough day, in terms of how I’d been feeling. I was glad I’d managed to get out and walk a bit, but that had been hard and I wondered if perhaps I’d have managed the day a bit more easily had I not pushed myself to do that. I’d felt a bit better during the evening, though I was still exhausted and couldn’t stay on my feet for long. I also noticed that the nails on my left index and middle fingers had developed dark marks on them. Damage to nails is a potential side effect of the chemo and that now seemed to be affecting me.

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 2 Days 7-8

Monday 1 – Tuesday 2 July 2019

I hadn’t slept well after the day out at Glastonbury. I woke feeling tired and sick. Not as bad as Friday or Saturday had been, but still quite rough. It felt like I was paying for having had a nice day out on Sunday. Had I overdone it at the festival? I didn’t think so, but I was feeling pretty bad, none the less.

The girls were back at school and I hoped that they wouldn’t be too tired after a busy weekend with late nights. I spent most of the day in bed.

A new symptom started bugging me quite strongly during the day. The back of my right upper arm, around the triceps, was very sore. It felt soft and tender, as if it had been punched repeatedly. I’d had a similar feeling about three weeks earlier, so I wondered if it might be something that was cycle related. But I also wondered if it had to do with my PICC line.

At some point during the morning, we heard some intense clucking from the back end of the garden. When Pia went along to have a look, our last remaining chicken, Lucy, was nowhere to be seen. It seemed like she must have been chased over one of the fences at the back of the garden. We couldn’t see or hear her anywhere. Pia had a walk around the neighbourhood to see if she could see any traces, but there were none to be found. She posted a message on a local Facebook group to see if anyone had any information but she didn’t get any immediate responses. We hoped that Lucy might find her way home.

I felt generally a little bit better the next day, but my arm felt worse. My forearm also started to hurt a bit. It felt a little heavy. I looked at my forearms side by side to see if the right was swollen, but I couldn’t tell. I was a bit worried though.

I spent most of the day in bed again, but also sat outside for a while. I mostly wanted to be fairly still as I was uncomfortable and had a slight feeling of sickness.

It was a nice day, so I spent some time lying outside

Pia and I had planned to go to a cacao ceremony and sound bath in the evening, and I still wanted to go even though I was feeling a bit rough. It was walking distance from home, but I didn’t feel well enough to walk that far, so we drove and parked as close as we could. My arm particularly was bothering me the whole way through, but Pia and I both had a nice time.

Before bed I checked my arms again, but couldn’t be sure whether or not there was any swelling. It was really bugging me though.

BEP Cycle 2 Days 4-6

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.