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 Days 19-20

Saturday 2 – Sunday 3 August 2019

I had a headache on Saturday morning and some sickness as well. I also found myself to be in a less than good mood. Other than that, I wasn’t doing too badly. This weekend we had to go to London. Some friends in Kingston-Upon-Thames were having a leaving get-together on Saturday evening (they were moving to overseas) and we needed to collect the girls from Heathrow Airport on Sunday afternoon, as they would be returning from Finland. Pia and I had decided to drive up on Saturday and stay the night in a hotel, so we wouldn’t have far to go to get to the airport on Sunday.

We set off about 12:30 with Pia driving, and we got to Kingston around 3 pm. We parked on the street we used to live on a few years earlier and dropped in on a couple of sets of friends to say hello. It was nice to catch up a bit.

The party in the evening was just around the corner in an Italian restaurant called Pepe’s. Some years ago it used to be a pub and it went through a few changes of hands before it became what it is today. Since then it has done very well and is a popular spot locally. The friends who had invited us are a family of four who had decided to move from London to Germany. They had invited a few families and friends to come for the evening, including some who we had met at their wedding a year earlier. We spent the evening around tables in the garden at the back of the restaurant. The weather was warm and clear and it was very pleasant to spend time outside.

I spent a long stretch of time on my feet which tired me out a bit, so I sat down for most of the rest of the evening. I ended up eating both pizza and pasta which is usually quite out of character for me, but it was a party. We stayed until about 10 pm, after which we went back to the car to get some things and walked to the hotel in the centre of town. It turned out that we’d come on the weekend of the Prudential Ride London cycling event and the next morning a lot of roads in Kingston would be closed, so it wasn’t worth us trying to drive closer to the hotel – we may not have been able to get out again!

I was exhausted when we reached the hotel and went to sleep quite easily, but didn’t sleep altogether well during the night. I remained awake for extended periods and was sleepy getting up in the morning. I had a shower and ate a banana while Pia popped out to find a cup of coffee.

We left the hotel around 11 am and had a wander around Kingston. We saw hundreds of cyclists on the return leg of the 100-mile route from central London into Surrey and back. Most people were on road bikes, but there were good numbers of riders on tandems, mountain bikes and even Bromptons. I’ve done a lot of long rides into the Surrey Hills before, but I’ve never taken part in this mass participation event before. It looks like it could be quite fun.

Looking around Kingston, it struck me that there were a huge number of empty shops, far more than there had ever been when we’d lived there. One big shop that we went into was having a closing down sale and another, though not closing down, looked a bit bare with noticeably less stock than usual. It made me wonder what might be causing a retail glut in the area: Online competition? Reduced consumer spending? Rising rental costs? I couldn’t possibly tell, but the effect was very clear.

I had to sit down for a bit after we’d been walking for a while, so we had a rest while we waited for Pia’s sister and her partner & son to come and meet us for lunch. Once they came, we walked through a local park next to the river and had lunch at a pub. After that we walked back to the car.

I was feeling fairly capable, so I drove us to Heathrow. We parked on the roof of the Terminal 3 carpark and walked to Arrivals to collect the girls. They took about half an hour to emerge and it was great to see them back again! Someone from the airline who was accompanying them, and a couple of other children, signed them over to us and we were able to hit the road. I was feeling ok, so I drove us all the way home with a stop part way to use the toilets and buy some snacks.

It was quite a big drive for me, having driven only very short distances on two or three occasions since starting chemo, but I managed well and was feeling ok when we got home. It was nice to have the girls back!

BEP Cycle 3 Day 18

Friday 2 August 2019

I woke early and tried to get back to sleep for a long time, but it wasn’t happening, so I got up a bit before seven. I gave my right ear a scratch and noticed that it didn’t give me any nerve pain in the back of my forearm, so the pain I had been getting was very likely something to do with the PICC line. I tried to replicate the pain, but now that my line had been removed, I found that I just couldn’t do it. So that was nice and went some way to answering where the pain had come from in the first place.

I also noticed that in addition to it being difficult to use my left thumb, index and middle finger tips, I was also finding it difficult to use those on the right. I would feel pain when pressing on or pulling with the finger tips. The nails on the right had become discoloured, but not quite so severely as those on the left.

I went upstairs around 9 am and spoke to one of the girls, who called us from Finland. After a few minutes I realised how tired I was and had to lie down, leaving Pia to continue the conversation. I ended up sleeping for two hours.

Pia and I had a wander into town during the afternoon. I was pretty exhausted by the time we got home. After having a rest, I managed to get a few bits and pieces done, then made some dinner. I was even more worn out after this. We settled down to eat on the sofa while watching an old Hitchcock film after which I was more than ready to sleep.

The chemo may have been over, but the tiredness was certainly still around.

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 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.