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 15

Tuesday 30 July 2019

I woke quite early and went out to open the chicken run and the greenhouse. I felt ok, but a little bit sick, and as on so many other mornings recently, I took a dose of Metoclopramide. When Pia got up, we sat on the sofa to finish watching a film that we’d started the night before.

It was raining quite a lot outside. Despite that, we decided to have a walk into town to get a couple of things. We were almost ready to leave the house on a couple of occasions, when I started to feel bad and had to lie down. When we finally got going, I was a bit slow and unsteady, but I coped ok. We were out for almost two hours in total and I was exhausted when we got home. Like the day before, I lay down and snoozed for a couple of hours.

For dinner we decided to try something new. We made butternut squash falafels with a herb and chilli zhoug sauce. We made some rice and salad to go with that. Pia also baked some oat and raisin muffins. I was getting quite worn out while cooking and I had to keep leaning on the bench or sitting down every so often. It was nice to eventually settle down to eat.

Butternut squash falafels with zhoug sauce, rice and salad

BEP Cycle 3 Day 14

Monday 29 July 2019

I felt quite reasonable on waking, similar to the day before. After I got up, I walked down the garden to open the chicken run and the greenhouse. I wanted to take it quite easy again, after yesterday’s unusual chest pain. Pia spent most of the morning working, but she did take a break and we ate some porridge together.

I spent a couple of hours sitting outside during the morning writing in my diary. This was an important exercise as it is a precursor for writing the blog, and I’ve published most of my blog posts 3-4 weeks after the events had taken place. Without a diary to refer to, it would be extremely hard to jog my memory enough to get have detail to write about.

While I was writing my diary, I heard some clucking from the other end of the garden, so I went to investigate. The ginger cat that had been harassing Lucy was back in the garden. When I arrived, the cat was standing about a metre from the Cochins, checking them out. The Cochins looked back, unfazed. Lucy was quite agitated though. I chased the cat out of the garden and Lucy calmed down after a couple of minutes. We were going to need to be quite careful with having the chickens out in the garden unoccupied, as we didn’t want to lose Lucy again.

After lunch, Pia and I went out in the car to get a few things for the chickens and to continue looking for a big plant pot. I started feeling very worn out quite soon after we left. I was headachy as well. We were out for about two hours in total and I was coping less and less well during that time, finding it hard to stay on my feet. I felt absolutely drained. When we finally got home, I lay down and snoozed for a good three hours or so.

Later on, Pia made some stuffed peppers and courgettes using the leftovers from our jackfruit curry and rice & beans as fillings. They were nice and there were even some leftovers to save for the next day’s lunch.

The afternoon had been quite hard. I’d been so tired with a bit of a sick feeling and a headache, and I’d been very slow and unstable on my feet. It felt like a bit of a setback after having just had three comparatively good days, from Friday to Sunday. Still, it wasn’t nearly as bad as it had been a week earlier.

Also, the damage to the nails on my left hand had developed a bit and they were looking worse than they had a few days earlier. It was becoming more difficult to use the tips of those fingers as putting pressure on them would cause pain. I was finding that I couldn’t use those fingers to open size squeeze clips or pull the lids off plastic containers, things like that. I still had my other hand though!

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.