BEP Cycle 3 Day 13

Sunday 28 July 2019

I felt ok waking up in the morning. However, when I got out of bed and leaned forward to pick something up from the floor, I had a sudden and unusual pain in the centre-left area my chest, radiating up towards my left shoulder. I’d not felt anything quite like that before and was initially distressing. It eased up after a bit, but for a short while I found that I could recreate the pain, to a degree, by making a similar movement. I was breathing fine and didn’t feel notably bad in any other way. I decided to take it pretty easy all day and to call my oncology team’s emergency number if the issue persisted. Fortunately it didn’t.

It was a lovely sunny day outside, warm but not too hot. We let all three chickens out into the garden. The Cochins stuck together and mooched around pecking at things. At one point we noticed one of them peck a bumble bee straight from a plant. Later, one of them had found a large worm. I sat on the ground for a while watching them. They came close to me a few times but were not quite brave enough to eat from my hand. Lucy chased them every now and then, showing that she’s in charge.

The new Cochins, looking around the garden

Our greenhouse gets a bit shady during the second half of the afternoon, so we took some of the potted plants out into the open to soak up some sun for a few hours. We also needed to attend to a few of them, notably tomatoes and cucumbers, that were not holding to their stakes very well. Pia also planted a few trays of seeds to get started, including beetroot and beans. Once they’ve germinated and reached a reasonable size, we’ll transfer them to the garden.

For dinner we wanted to make Gallo Pinto, or rice and beans, Costa Rican style. When we visited Costa Rica in 2006, this was served as part of almost every meal and it is delicious. The secret ingredient is a sauce called Salsa Lizano. This is not really available outside of Costa Rica and even if it was, some of the ingredients on the label can be a bit off-putting (MSG, etc.). We found a recipe online that attempts to make something equivalent to Salsa Lizano, but with fresh ingredients, so we tried that. We boiled some black beans, that had been soaked overnight, and cooked some rice. We then combined them with celery, red pepper, garlic, onion and our sauce. It came out nice! It wasn’t exactly like we remembered, but it was pretty good. I think we’ll need to return to Costa Rica to experience the authentic flavour again, but at least we have a good home made alternative.

I didn’t get any more of the morning’s chest pain during the day. I still had a heavy feeling in the chest and a cough, which had persisted for weeks, which I presumed to be due to Bleomycin, but that was different. My breathing was all fine and I’d taken it easy enough during the day that I’d not worn myself out too much, so all in all I felt that I was doing ok.

BEP Cycle 3 Day 12

Saturday 27 July 2019

I was feeling quite good on Saturday morning, as I had been on Friday. After we got up and ready, we headed out and started driving to the chicken breeder’s place. They live in a village called Baltonsborough, near Glastonbury, which was beautiful to drive through.

The breeders were very knowledgeable when it came to keeping chickens and they were able to give us a lot of advice. They had birds of a number of different breeds available for purchase, each with their own characteristics. After much deliberation we decided to take two white Cochin hens.

Cochins are big and fluffy with feathers over their feet. They are quite calm and friendly and are supposed to get on well with other breeds. They can’t fly, which is good for us as they shouldn’t end up escaping over the fence if chased, as Lucy has been a few times. They will lay 3-4 eggs at most per week, which is less than Lucy, but still nice. There were other hens available who would more regularly lay 6-7 eggs per week, but we decided that the calmer personality of the Cochins would suit us best.

It had turned out to be another nice warm day. I was a little worn out when we left the breeder’s, but still feeling fairly decent. We drove home with the Cochins in a cardboard box in the back of the car.

When we got home, we repositioned the chicken coup and run, letting Lucy out to roam around the garden. We made sure that there were water and food available both inside and outside of the run. Then we introduced the Cochins to the run and closed them in, so that they could spend the rest of the day familiarising themselves with their new environment. Lucy, on the outside of the run, was quite interested in he new arrivals and strutted around looking in and making noises. It would be interesting to see how they interacted later on.

The new arrivals, two white Cochins familiarising themselves with the run

After lunch I was quite exhausted. I lay down for a while and slept for an hour or so. Although I was feeling comparatively better to how I’d been a couple of days earlier, I was still nowhere near normal. I’d had a pretty active morning. This was something that I needed to be careful about, as life was still very tiring and I didn’t want to do more than I could manage.

For dinner we decided to make a jackfruit tikka masala curry. For this, we first needed to make a marinade, so we did that and left the jackfruit to soak it up for a couple of hours.

Before we started cooking, we let Lucy into the chicken run. She immediately started asserting her dominance over the newcomers. She’d occasionally charge at them and might pluck out one of their feathers. The Cochins are quite docile and didn’t fight back. It was quite clear that Lucy would be head of the new pecking order, which was interesting given both that she is the smallest of the three and that she was always at the bottom of the pack when our previous two chickens lived with her.

We finished preparing the curry, adding some courgette and butternut squash to the recipe to make it nice and thick with lots of goodness. Once finished, we sat on the sofa to eat it. It was delicious.

Jackfruit tikka masala curry, almost ready

I was still quite tired in the evening but refreshed from having napped during the afternoon. I’d have to make sure that I didn’t over-do it in the days to come.

BEP Cycle 3 Day 11

Friday 26 July 2019

I woke up in the morning feeling quite good. I was much improved compared to the previous few days, which was both surprising and elating. It was a total contrast from the day before. I didn’t feel anywhere near completely normal, but the improvement was a huge boost and mentally I felt over the moon!

I still took it fairly easy for the day, but spent more time outside and pottering around in the garden. It had cooled down quite a bit so being outside was much easier. The previous few days had been in the 30s, but Friday peaked at about 23 C which was nice and comfortable.

Pia baked a loaf full of buckwheat, seeds and butternut squash. We had some for lunch and it was delicious. It was a recipe that we used to make a few years earlier, but it had been a long time since we had last done it.

We spent quite a while after lunch sitting outside and talking. We decided that the next day we would go and get a couple of new hens to join Lucy, as she was starting to look quite lonely on her own. The question was, what sort of hens? And where would we find them? I contacted one breeder by email, but they didn’t currently have any breeds that we thought would be suitable for us. We then discovered another breeder near Glastonbury who had a good variety of hens available, so we decided that we would visit there the next day.

Later in the afternoon, we drove to Homebase to see what kinds of large plant pots they had, as I wanted to repot one of my feijoa plants that was getting too big for its existing pot. We didn’t see anything that took our fancy, but we did buy another pot in which I could put an olive plant that I had received for my birthday.

My olive plant in its new pot

When we got home, we spent a couple of hours out in the garden. I clipped back a number of brambles and roses that needed tidying up, and I pulled out some ivy and dried up stems from one messy looking corner of the garden. I think I wore myself out a bit with this as I was quite exhausted afterwards and could no longer stay on my feet for more than a few minutes at a stretch.

Pia cooked some home grown potatoes and courgette for dinner. She had dug up a row of potatoes the day before and had been pleasantly surprised to find 3-4 kilograms of nice looking specimens, including some big ones. We’d had a home grown courgette almost every evening during the last week, they were coming thick and fast.

All in all, I’d had a great day and was feeling so much better than I had at any point during the previous week. I was very grateful for that. It was truly amazing what difference there could be from one day to the next.

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 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 8

Tuesday 23 July 2019

I woke up around 8:30 feeling very groggy, for want of a better term. My stomach was not feeling quite as disturbed as the day before. I noticed that I was getting louder instances of tinnitus, which made me wonder how loud I might eventually perceive it, if it were to continue to develop.

I got up and went outside to sit in the sun for a few minutes. I also walked along the garden to open the greenhouse. It was quite hot and didn’t feel comfortable to stay out in the sun for too long. I went inside and tried to do a few bits and pieces, but quickly found myself alternating between managing to do some small things and having complete exhaustion and needing to sleep, or at least lie down. This persisted for most of the day.

In the evening, we sat on the sofa and watched a film while eating dinner. My appetite was still good and I ate well. I noticed the tinnitus quite clearly as the evening went on.

As I was going to bed, a big storm passed overhead with torrential rain and incessant thunder and lightning. Normally I would have sat by the window and watched it, but I was so tired that I went straight to sleep. It was quite a surreal feeling to be drifting off to such a big sound and light show, clearly knowing that it was there but not actively paying attention to it.

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.