Post-BEP Recovery

I apologise, dear readers, for my lack of communication these past several months. You may think that I completed my course of chemotherapy and went happily on my way. While that is true, it did not turn out to be the end of my story. I shall endeavour to fill you on what you have missed during the last 10 months and let you know how things are progressing for me.

The last day of my final BEP chemotherapy cycle was 5 August 2019. I had hoped that the following week would see me feeling somewhat better and more energised, but I was actually still extremely tired and had to take it quite easy most of the time, napping most days. I gradually felt less and less tired over the next few weeks, but it was a slow process. Although I became more and more physically capable, I became tired easily and still had occasional bouts of faintness for a couple of months. It just takes time.

I had to continue taking blood thinning injections twice per day for a month after chemo, which was unpleasant. My belly was getting bruised, sore and lumpy. I started having to inject in other spots that were in better condition, usually in the side of the glutes.

The stinging in my urethra continued for two or three weeks, as did the tinnitus, before gradually subsiding. I still had issues doing certain things with my fingertips a month after chemo finished, but that gradually improved. My finger nails actually got worse before they got better (half of one of my thumb nails actually snapped off after a couple of months). It took a good 9-10 months for the damaged parts of the nails to grow out. Although I had no issues with my toe nails at the end chemo, one of them has since appeared to be damaged in the same way that my finger nails were and I can’t see that growing out for quite a while.

After about three weeks, I noticed some definite facial hair reappearing, but it was thin and soft, unlike regular stubble. Likewise, when I started getting some more growth on my head after a few weeks, it was very soft, like that of a newborn. As it grew, it also proved to be much more curly than usual. After a first proper cut, several months later, the curliness returned to normal.

A bit of downy fuzz after seven weeks
Curly first growth, five months after chemo finished

One thing which I hadn’t expected, is that I started to forget what I was saying half way through saying it. I would often start explaining something to someone only to stop mid way through a sentence with absolutely no idea how I intended to continue, even though I had known exactly what I was going to say when I started speaking. This happened quite often and was both frustrating and at times embarrassing. The worst of that occurred during the first 6-7 months post-chemo, but it is still happening occasionally today.

Things slowly started getting back to normal. I’d say that on the whole, I felt more reasonably capable of getting through a day of normalish activities after 2-3 months (with some exceptions).

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 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 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 10

Thursday 25 July 2019

I woke feeling very rough, similar to the day before, only this time I had a headache as well. I usually tough it out, but instead I decided to have some paracetamol and ibuprofen for the headache. This was only about the third time I’d resorted to using pain killers during chemo, each time being for headaches. I prefer to only take something if I really need it.

It was very hot again and going out in the sun for more than a minute or two at a time was too much for me. Mind you, I was already feeling quite unstable in the shade and couldn’t stay on my feet for long. I spent the day in bed, again with alternating periods of sleep and wakefulness. I was quite glad that I didn’t have to go out anywhere today.

When I was awake and feeling capable, I tried to learn an alternate method for solving the Rubik’s Cube. The traditional, or easiest, method for solving a 3×3 Rubik’s Cube is to do it in layers: the bottom, the middle, then the top. I could do that, but I wanted to learn how to solve it by correctly placing all of the corners first, then the remaining pieces. Learning such a process usually involves a lot of repetition in order for it to sink in and become second nature. It never seems very easy to begin with, but with a bit of perseverance it doesn’t take too long to understand the moves and become fluent. I had an initial mess about with it at least and started to learn some of the preliminary steps.

I was feeling marginally better in the evening and came downstairs to eat. We sat on the sofa and started watching a film. We also talked to an old friend who lives in the USA, who we’d not been in touch with for a little while. That was really nice.

I was still feeling pretty tired and unwell when going to bed. I also noticed that the nail on my left thumb had started to discolour like those on my left index and middle fingers. All of my other nails were ok.

BEP Cycle 3 Day 7

Monday 22 July 2019

I woke around 5 am and couldn’t get back to sleep, so I got up shortly after 6. I wasn’t feeling too bad. I had a look at the blog for a bit, until Pia got up. I had a BodyTalk appointment at 10, so after having my morning shot of Clexane, I had a shower to get ready for that. I also shaved, not that I had any stubble, but I did have a number of wispy white hairs sporadically protruding from around my chin.

I wasn’t feeling so good after the shower, a bit sick and sluggish. I walked 15 minutes in the heat to get to BodyTalk and I was thoroughly worn out when I arrived. I felt dizzy and was glad to sit down. The session went well and afterwards I thought I’d try walking home, knowing that I could always call Pia if I needed her to collect me. I managed, but it felt like quite a struggle towards the end. I got home shattered and feeling ill and I just needed to lie down.

Pia brought me some porridge after a while, which went down well. After that I slept for a bit and spent the rest of the afternoon in bed. I was feeling really tired and unwell. My stomach felt as though it wanted to be left alone completely while at the same time would have liked to have been filled with something solid. It was very uncomfortable.

Tinnitus was quite pronounced, but not much bother. More annoying was that my mind was repeatedly attaching to a little thought bubble that was blasting out Going For Gold by Shed Seven. Not that it’s a bad song, it was just hard to shake.

Pia spent most of the afternoon working, but she came up a couple of times and we chatted about lots of things like holiday possibilities, whether we should get a dog and also about getting some new chicken friends for Lucy. She went to the supermarket around 18:30 and after that she made some pea pasta with pesto and a load of fresh toppings: grated courgette from the garden, basil, spinach, tomato, olives, artichoke, pine nuts, chilli flakes, ground cashew nuts, beetroot, cucumber, avocado, salad leaves and black pepper. That went down very well and I could easily have eaten twice as much. I’ve certainly managed to keep a good appetite throughout my treatment.

The girls called us from Finland in the evening once they had made it to their destination. It sounded like their journey had gone well.

It had been quite a rough day, in terms of how I’d been feeling. I was glad I’d managed to get out and walk a bit, but that had been hard and I wondered if perhaps I’d have managed the day a bit more easily had I not pushed myself to do that. I’d felt a bit better during the evening, though I was still exhausted and couldn’t stay on my feet for long. I also noticed that the nails on my left index and middle fingers had developed dark marks on them. Damage to nails is a potential side effect of the chemo and that now seemed to be affecting me.