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.
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.
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.
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.
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.
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.
I was feeling very lethargic and a bit sick in the morning. I just wanted to lie still. I had Clexane, Omeprazole and Metoclopramide around 9 am. I turned down hospital breakfast when it was offered, eating a banana a bit later on instead.
I spent most of the morning either sleeping or lying very still, not feeling good at all. Pia arrived around 13:00. I continued sleeping for a while.
Lying still, feeling tired and sick
I couldn’t handle going for much of a walk. I did however get up and dressed and we walked down to the hospital’s main entrance to get some food from M&S. It was much more of an effort than the day before, but this was also the case on the third day of inpatient treatment in cycles 1 & 2, so I was getting kind of used to it.
We came back to the ward and I had my steroids. We ate a little and then I was hooked up to the IV pump for my final inpatient chemo session. It took just a little over two hours to complete. We headed home after that with another party bag of drugs, this one including 30 Clexane injections to keep me busy for the next 15 days.
Starting on my final inpatient chemo treatment – nice to be getting towards the end of it all
It was nice to get home. Pia’s mum had been a great help in looking after the girls all week. As it had been the girls’ last day at school for the year, they had cleared their desks and brought home lots of bits and pieces including all of the artwork they had done throughout the year. We had a look through some of that during the evening, which was nice. Very impressive!
As I’d been feeling so tired and unwell all day, I didn’t waste too much time in getting to bed. I slept well.
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.
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.
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.
A Journey Through Cancer 