BEP Cycle 3 Day 3

Thursday 18 July 2019

I woke around 5:20 and couldn’t get back to sleep, despite feeling very tired. For around ten minutes I got a stitch-like pain in my right side which I hadn’t experienced before. It didn’t cause too much distress though and went away fairly easily.

A nurse came in quite early to check my blood pressure, temperature, etc, and to take some blood from my PICC line – no blockages this morning! My mum called a bit later and I spoke to her for a while. After the night shift nurses handed over the day shift nurses around 8 am, I was brought my morning Clexane injection, Metocolopramide and Omeprazole.

One of the doctors wanted me to have another chest x-ray, so my nurse called ahead and arranged it with the radiology team. I got myself up and dressed and headed down one floor for the x-ray. It was all pretty quick. I was feeling quite tired and fragile, but I coped ok.

I spent the next few hours sitting in bed, reading a bit and trying to progress with writing the blog, which I was about three weeks behind with. I had visits from a nurse, who pricked my finger to check my blood sugar levels, and a doctor, who just came to see how I was getting on.

I had a bit of hospital food for lunch: broccoli, peas, carrots and potatoes. Pia arrived not long afterwards. It was a beautiful day and we went for a walk up to the university gardens and sat there for a while. We then walked a bit further and dropped into a couple of shops before heading back to the ward. I was feeling quite a bit more capable than I had been in the morning.

Heading out for a walk. I was staying in a room just to the right of the top window in this picture.

We were back by 16:00. I was given my Dexmethasone dose for the day and was hooked up to my IV pump around 16:30 for the day’s chemo, which consisted of:
Etoposide – 500 ml over one hour
Etoposide – 500 ml over one hour
Saline – 1000 ml over one hour
Mannitol – 400 ml over half an hour
Cisplatin – 500 ml over one hour
Electrolyte solution – 1000 ml over two hours
Bleomycin – 250 ml over two hours

Pia and I ate a bit. She had brought me some rice and vegetables from home. Some hospital food also arrived, so I had some of that too: vegetable pie, potatoes and some other veg. We watched a film together and then Pia left shortly after 19:00.

The second day of inpatient chemo is always a long tiring session. I was quite tired but spent most of the evening awake, trying to add to the blog. I was utterly exhausted by midnight and tried to sleep as the final two-hour bag of Bleomycin was being infused. I was disconnected from the IV pump a bit after 2 am, and slept well after that.

BEP Cycle 3 Day 2

Wednesday 17 July 2019

I felt pretty decent waking up. I made a glass of citrus juice and ate a banana. I was going to call the hospital at 8:30, but they called me first to ask how soon I could come in. Given that I had a lung function test booked for 13:30, chemo wouldn’t be able to start until after that. We decided that I’d come in around midday so that they could take some blood and things, then I’d go for the lung function test.

We headed off about 10:30 and had a fairly easy drive in, except for some delay in Bristol due to an Extinction Rebellion protest blocking a busy intersection near the hospital. We found a parking space in the first place we looked, which was good. Parking is generally quite difficult around the hospital.

When I got up to the ward, I found that they had given me the same private room that I’d had in cycle 2, which was a nice surprise! The nurses got started by trying to take some blood from my PICC line, but nothing was coming. It seemed that there was a blockage in my line, so they took blood via a needle from my other arm instead. I was given a shot of fluid into my PICC line to resolve the blockage.

With a blockage in my PICC line, blood had to be taken the traditional way from my other arm

Pia and I wandered down to another part of the hospital for my lung function test. It was basically a repeat of the test I had done six weeks earlier. The physiologist said that the results looked fairly normal and quite close to those in my baseline test. I’d largely expected that, as despite having a heavy chest and a lot of coughing, I was still able to take full deep breaths without any problems.

Breathing in and out of a tube as part of the lung function test

On the way back to the ward, we stopped at the little Marks & Spencer store to get some food. Once back, I had my PICC line redressed and I was given my premeds: Akynzeo and Dexmethasone. I was also visited by one of the germ cell oncologists who I had not met before. He had a good bedside manner and was pleasant to talk to. When I mentioned to him how I could trigger the nerve pain in my right forearm by pressing on my ear, he could not think of any explanation, but he said that cisplatin can sometimes affect nerves in an unusual way.

Chemo got started around 16:30

I ended up having to wait a while for chemo to get started. I was finally hooked up around 16:30 for the usual day 1 routine:
Etoposide – 500 ml over one hour
Etoposide – 500 ml over one hour
Saline – 1000 ml over one hour
Mannitol – 400 ml over half an hour
Cisplatin – 500 ml over one hour
Electrolyte solution – 1000 ml over two hours

Pia and I watched a couple of films as the treatment got going. I was also brought some hospital dinner consisting of lentil pie, peas, carrots and potatoes. Pia left a bit after 19:00 and had a fairly easy drive home. I was feeling pretty exhausted by this point, but listened to a couple of podcasts and watched a docu-film while the treatment progressed. One of the nurses brought me my evening Clexane injection around 21:00.

As per cycles 1 & 2, I was making a lot of toilet trips and filled several bottles for the nurses to take away. I was finally detached from my IV pump shortly after 1 am and went to sleep quite easily after that.

BEP Cycle 3 Day 1

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

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

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

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.

BEP Cycle 2 Day 16

10 July 2019

It was another warm and sunny day. I was feeling much the same as the day before, quite tired but not too bad. My cough was about the same as it had been the day before. I had another day chemo session in the afternoon so we drove to Bristol after lunch.

Heading up to the day chemo unit on the fifth floor

As it was quite a hot day, the hospital was a bit stuffy and they’d had to open the windows. Some of the patients looked a bit uncomfortable. I was ok though.

My session went fairly smoothly. I had some blood taken and my PICC line redressed, then I was connected to the IV pump for just under an hour and a half.

Receiving Bleomycin via the IV pump

As usual after receiving Bleomycin, my chest felt a bit heavier on the way home and during the evening. I took it fairly easy until bed time.

BEP Cycle 2 Days 14-15

Monday 8 – Tuesday 9 July 2019

I started the day feeling pretty good. I walked the girls to school and then went for a Bodytalk session for an hour. Once I was home, Pia and I ate some porridge and then headed into the vegetable garden.

I was feeling a bit tired and slow by this point, but still managed to pull some weeds from each of the vegetable beds. There were quite a few weeds, but they all reasonably small and came out fairly easily. Pia set about harvesting the garlic which we had planted in the autumn. She counted no less than 90 bulbs!

A good harvest of garlic that will keep us going for a while

In the afternoon we had a visit from Julie, who we had met when she came around a few weeks earlier to learn from Pia how to make water kefir. It was nice to see her. We sat outside chatting and eating strawberries and watermelon. Pia and Julie went together to collect children from school and I headed into town for a drop in sound healing session which is on every Monday.

On the way home my hayfever started to flair up. It had come fairly late this year, I think as it hadn’t gotten very warm until the end of June. I had a hard time in the evening with a raw nose, snottiness and a headache.

On top of that, I’d been feeling a growing heaviness in my chest recently and had been coughing quite a lot. The coughing was shallow and dry, not much substance to it, but it was interrupting my talking quite a lot. This was quite apparent when I was putting one of the girls to bed and trying to read some stories. I’d often have to cough before I could complete a sentence. It was annoying, but didn’t feel serious.

I got to bed reasonably early, but was quite tired when I woke on Tuesday morning. I had a fairly easy day, spending much of it in bed. I noticed that my cough was getting slightly worse.

The other thing I noticed was to do with the nerve pain in the back of my right forearm and wrist. I had thought that it was triggered by how I moved my right hand, having noticed that I would feel the pain when pressing my right ear with it. What I now noticed was that I could trigger the pain by pressing my right ear with my left hand, so there was some kind of connection between my right ear and the nerve in the back of my right forearm! That was quite a revelation, although I couldn’t start to explain it. I assumed that either the nerves were linked or that there was an acupressure point in the ear that was associated with the area of the nerve pain. Very interesting.

BEP Cycle 2 Day 13

Sunday 7 July 2019

On Sunday morning, Pia had received a message that a chicken matching the description of Lucy had been sighted nearby. When we lost her, she must have gone over the back fence, through the rear neighbour’s garden and across the road, as she’d spent the previous couple of days in at least two gardens over there.

We grabbed a cardboard box and some chicken food and headed over to one of the houses, which was owned by someone Pia knew from yoga classes. We had a good look around the garden and over the fence to the next door neighbour’s garden, but she was nowhere to be seen. Apparently she had been there for most of the day on Saturday, so we hoped that she would be back again later. The couple living there said that they would let us know as soon as they saw her again.

After that, we got ourselves ready and headed into town. The monthly Independent Market was on and we were going to be meeting our friends who had been around the previous evening. The market is quite a big event and always a great day out when the weather is good, which it was. It was hot and sunny and there were loads of people about. We walked about, looking at all of the stalls and shops, then everyone found some lunch from amongst the numerous food options (I’d brought something from home for myself). I bought the girls some fresh lemonade after they’d eaten. We ran into a few people we knew, including one artist that was exhibiting in a small shop/gallery and was spinning yarn from wool on a big wheel when we saw her.

We stayed out for a few hours, after which we said goodbye to our friends and walked home. I’d done pretty well, but was thoroughly exhausted by this point. When we got home I had to lie down and sleep for a bit.

Maybe the highlight of my day was catching up with an old friend on the phone. I’d not been in touch with him for probably close to 15 years. We talked for over and hour which was really nice.

I got out in the garden and gave it a good watering before the end of the day. There had been no further signs of Lucy unfortunately. I hoped she would turn up soon, now that we knew she’d been seen so recently.

BEP Cycle 2 Days 10-12

Thursday 4 – Saturday 6 July 2019

I was really tired on Thursday and couldn’t stay on my feet for very long at a time. I ended up staying in bed most of the day, sleeping for some of it. I noticed that I was getting more regular tinnitus, but each burst only lasted 10-15 seconds.

I was feeling a bit better on Friday, in terms of tiredness and general ability to do things. However, I had a very achy back and joints during the morning. I put this down to possibly having been slouching too much during the previous day or two. I stayed on my feet for quite a long time as it was hurting my back to sit down. I alternated between standing and lying flat on my back with no pillow for most of the day, napping on a couple of occasions.

Towards the end of the day the aching in my back eased. I went outside for a little while in the evening and watered the garden.

I noticed episodes of tinnitus quite a lot, as per the previous day. The stinging when urinating had also become quite intense and I felt that I was getting a bit phlegmy.

My chest felt more phlegmy the next morning. It was a hot and sunny Saturday and our friend Stuart had offered to come and help us in the garden. Although I’d managed to mow part of the lawn on a good day a couple of weeks earlier, I’d not been in a fit enough state to take care of the rest of the garden and it was getting a bit out of control.

Stuart brought a trimmer round with him and he started by running it over the grass at the back of the garden to get it down to a reasonable length. I then started to mow over the areas that he had trimmed. In the heat and with my general level of wellness, I was quickly overwhelmed and needed to sit and rest. I got up and down and helped with bits and pieces, but Stuart did most of the work, for which I am very grateful. Each time I got up and did something for a couple of minutes, I started to feel faint just couldn’t stay on my feet. Stuart stayed for 2-3 hours and left with the end of the garden in a much more manageable state than it had been to begin with. It was really nice of him to come around.

After he left, I had to go and sleep for a while. It had all been quite exhausting.

A family we know but hadn’t seen for a couple of years were coming up from Dorset and staying locally for the weekend, so Pia and the girls popped out to meet them in the afternoon. They spent a bit of time in town then visited the nearby Pyle Farm which has an ice cream parlour. I had a shower after napping and everyone came back to ours for dinner in the evening. I was feeling a bit more refreshed by this point.

On the whole it had been an exhausting day, but I’d still been feeling generally better than I had during the previous few days. My arm was also bothering me less, which was a good sign.