Category: Day to day

BEP Cycle 3 Day 11

~ andrewamies ~ Leave a comment

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

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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 8

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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

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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

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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

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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 1

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Tuesday 16 July 2019

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

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

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

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

BEP Cycle 2 Day 21

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Monday 15 July 2019

Today was the last day of cycle 2 and I was feeling pretty good! I squeezed a grapefruit and some oranges to make a juice and had that with some other fruit for breakfast.

I put out the rubbish and recycling which was due to be collected. We’d accumulated a fair amount of cartons and plastics, which are not collected by the council, so I decided it was time to drop them to the local recycling centre. I drove down there, then dropped into a couple of shops, got a few things from the supermarket and filled the car with petrol.

I was feeling considerably less tired than any day recently. For me, this was almost a repeat of the last day of cycle 1, on which I was feeling great and had a very active day.

I felt that I still had a good amount of energy when I got home, so I ran the lawnmower over the back lawn and around the vegetable garden, which was already nice and short since Stuart had come to help a couple of weeks earlier. After I’d finished that though, I was pretty worn out and needed a good rest. So it wasn’t quite a repeat of three weeks earlier, but I’d done pretty well. I spent the afternoon a bit more leisurely, still managing to fold a big pile of laundry and to pack some things for my next hospital stay the following day.

Pia’s mum had flown over from Finland and was coming to stay for the week to look after the girls while I was in hospital, freeing Pia up to come and spend some time with me in Bristol every day. She arrived on the train during the afternoon and Pia collected her from the station.

In the evening, Pia got a message from one of our neighbours that they had seen a sign on a lamp post asking if anyone had lost a chicken. Pia called the number from the sign and the description of the chicken that had been found matched Lucy. She had been caught in a garden about 500 metres away from our house, and the person who had caught her had left her with a neighbour who had a flock of chickens.

We went around to see them and sure enough, there was our Lucy! She had been put in a little coup on her own and they were going to let her out to associate with the other chickens (including a rooster that had been eyeing her up) after a few days if nobody had claimed her. We had a good chat to the couple who lived there. They knew a lot about keeping chickens and had several nice breeds in their flock. We were really glad that they had been able to look after Lucy for a day or two, and even more glad that we were now able to bring her home. She’d had quite the adventure, travelling half a kilometre across roads and through several gardens over two weeks. It’s a wonder she survived, but we’re very grateful that she did! We brought her home and put her into our chicken run. We thought we’d keep her in there for a few days so that she could re-familiarise herself. Then we’d need to be careful about when we let her out, should that cat come and chase her again.

So cycle 2 was complete. Here are some of the highlights:
– I’d experienced a lot more tiredness than in cycle 1 and needed to sleep or rest much more often
– I’d still had a lot of occasions on which I couldn’t stay on my feet for too long
– I’d had some mild headaches, but nothing too bad
– I’d had feelings of sickness that I’d not had in cycle 1, particularly on the couple of days after my inpatient stay, and the couple of days after Glastonbury
– Tinnitus had been more apparent than in cycle 1, but it wasn’t bothersome
– I’d had mild temperature spikes on days 9 and 16 of the cycle (day chemo days), but my temperature didn’t exceed 38C
– Like in cycle 1, I’d started to lose my voice a little on days 4-5
– The heavy feeling in my chest had gotten worse, but I was still able to breathe normally
– I’d developed a shallow dry cough which was more annoying than anything else
– I’d developed a nerve-like pain in the back of my right forearm and wrist
– I’d developed a blood clot along my PICC line, for which I was prescribed two injections per day of anti-coagulant medication
– The stinging in my urethra had remained and been quite bad on some days
– My head was looking even more bald than when I’d just cut all of my hair off – clearly more of the remaining short hairs had rubbed off or fallen out
– My facial hair had stopped growing and I wasn’t getting any stubble, but I did have a few thin whispy white hairs protruding from my chinny chin chin, which had required a shave
– I still had a good appetite
– I hadn’t had any proper nausea, but I was taking Metoclopramide whenever I had a feeling of sickness

Towards the end of cycle 1, my oncologist had suggested that I might find cycle 2 easier to manage. That had definitely not been the case, but on the whole I felt that I’d been coping pretty well. It would be interesting to see how cycle 3 would go.

BEP Cycle 2 Days 19-20

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Saturday 13 – Sunday 14 July 2019

I woke up around 8:00 and went downstairs, feeling fairly good. I prepared breakfast for our guests and the rest of the family once everyone else started to emerge. After an hour or so on my feet, I was worn out and needed to go and lie down for a bit.

Later in the morning we all drove into town to have a wander around. We had a look at some shops and a small market that was on, then everyone was keen to eat. I was getting tired, so I walked home while the others went back to the car and headed to the café and ice cream parlour at the nearby Pyle Farm. I got home quite exhausted, but had enough energy to make something to eat before having a rest. The others got back after a couple of hours and our friends headed off to their next destination in Dorset. It was great to have had them visit.

Our eldest daughter had been invited to a sleepover on a farm which she used to visit frequently a year or two earlier. One of her friends came to collect her, leaving us with just one child for the night. We got her off to bed straight after dinner, which gave us the luxury of a free evening. We picked a film (after much deliberation) and stayed up to watch that, quite ready to sleep by the time it finished.

The next morning I was still quite tired, not really having been able to shake the fatigue off over the past few days, but at least I wasn’t feeling sick. The cough was still there and I was beginning to expect that to now be a permanent feature during the chemo.

Pia and I spent a little bit of time in the garden. We repotted a couple of plants and Pia put a few new seedlings in vegetable beds. I rearranged a few things in the greenhouse, trying to make the best use of the space for what we had in there.

Pia went out to collect our elder daughter (and her friends) from the sleepover. After lunch, the two of them went to Bath to do some shoe shopping and I stayed at home with our younger daughter. We played some board games and had a mess around with my little Roland TB-3 digital synthesiser. It’s a newer digitally modelled version of the classic TB-303 from the 1980s, which is famous for its unique squelchy bass lines popularised by the sounds of acid house and acid techno dance music. It’s quite good fun.

I went out and watered the garden before dinner. After dinner, and once the girls were in bed, Pia and I dealt with a few bits of admin before going to bed ourselves. I’d been feeling ok most of the weekend and managed pretty well, but the tiredness was pervasive. Although I was coping with getting things done and even spending time in the garden or walking around town, it was exhausting and I was still having to rest a lot. I suppose that’s not surprising though, being six weeks into my chemo schedule.

BEP Cycle 2 Days 17-18

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Thursday 11 – Friday 12 July 2019

I was quite tired on Thursday and took it pretty easy. I was a bit tired and sluggish on Friday as well.

I had an appointment with an oncologist on Friday morning to discuss how I was getting on with the chemo, now that I was near the end of cycle 2, and to have bloods taken to check my tumour markers and full blood count. The oncologist was quite happy with how I was getting on, on the whole, however she was a bit concerned about my cough and the heavy feeling in my chest.

Bleomycin is known to affect the lungs, but we wouldn’t want it to affect my lungs too much. She said that she would arrange for me to repeat the lung function test to see if there had been any degradation. If there was, beyond a certain amount, they would consider stopping giving me Bleomycin. As I’d taken the plunge with chemotherapy and already come this far, I didn’t really want to stop taking something that might be helping to halt the spread of cancer cells. Despite the cough, I was still able to take deep breaths quite easily, so I was fairly confident that the results of the lung function test would be close to normal.

I also asked about the stinging in my urethra. As I’d already had two urine tests which came back negative for infection, the oncologist said that it was probably just a chemo thing. Although it felt quite unbearable at times, I’d been starting to get to grips with it, trying to treat it as a sensation rather than judging it and experiencing it specifically as pain.

Once we got home in the afternoon, I went into the garden to try repotting a couple of plants, but I was quite exhausted and didn’t get very far before having to head inside for a rest. By Friday evening I’d started perking up. We had some friends coming down from London to stay the night, arriving around 8 pm. I decided that I’d get busy in the kitchen and cook some dinner to be ready for when they arrived.

I decided to make a jackfruit curry. We had a few tins of young green jackfruit, but I’d not cooked with it before. I used a recipe for a swede curry as my base and referred to a recipe for jackfruit tacos to ensure I cooked the jackfruit element of it in a suitable way. It turned out pretty well, but I think it could have used some more spices to give the jackfruit a bit more flavour. Everyone enjoyed it.

Jackfruit curry in progress

I stayed up quite late in the end, and was exhausted again by the time I got to bed.