BEP Cycle 3 Day 21

Monday 5 August 2019

As it was the last day of cycle 3 (and indeed the last day of my entire chemo schedule!), I had hoped that I would have been feeling as good and active as on the last days of cycles 1 & 2. However, I was actually very tired and had some feelings of sickness as well. I’d woken quite early and couldn’t get back to sleep which didn’t help. I ended up staying in bed for most of the day and napped a fair amount.

So the last day of my nine weeks of chemo was not that exciting, but it was great to have the girls back from Finland and spend some time with them, and Pia made some excellent roast potatoes for lunch (home grown potatoes) and a really good mushroom risotto for dinner.

Cycle 3 had been much tougher than cycles 1 & 2. Side effects had tended to be stronger and I had a lot more tiredness and sickness. I was very glad that I didn’t have to start another cycle and hoped that all the drugs I’d loaded into my system over the past couple of months were having the desired effect.

Here’s a quick recap of what I’d experienced during cycle 3:
– Tiredness was more intense and more common than in previous cycles and I’d been sleeping a lot more
– Headaches were still occasional, but stronger than previously
– Feelings of sickness had become regular and I’d been taking Metoclopramide for it most days
– I’d had some proper nausea this cycle, though I’d not vomited at any point
– Bouts of tinnitus had been longer and stronger, but didn’t cause me any real bother
– I had a slightly raised temperature after having Bleomycin on day 9, which I’d also experienced in the two previous cycles, but my temperature didn’t exceed 38C
– As per cycles 1 & 2, I lost my voice a little a couple of days after my inpatient stay, but it was not as obvious as on cycle 1
– The heavy feeling in my chest had gotten worse, but I was still able to breathe normally
– The cough I’d developed during cycle 2 had gotten progressively worse and I was struggling to get through anything more than a short sentence without having to cough
– The nerve-like pain in the back of my right forearm and wrist disappeared after my PICC line was removed
– I’d not had any further discomfort in my right upper arm, so I imagined that the blood thinning injections must have been doing their job. The downside of the injections was that they were less comfortable to administer than the Filgrastim shots, and I was getting a very bruised, swollen and lumpy belly.
– The stinging in my urethra had continued unabated and felt quite bad more frequently. I was trying not to let it bother me, but it was not exactly easy to ignore.
– My eyebrows had been gradually thinning out and although I’d not lost them, it was clear towards the end of cycle 3 that they were nothing like the dark bushy brows that I usually had. Likewise my eye lashes had thinned out significantly and there were some gaps of up to around 6 mm between some individual lashes.
– The nails on my thumbs, index and middle fingers were noticeably discoloured and ridged. It was sore to press on or pull with the finger tips, so there were a number of simple tasks like opening tub lids which became difficult. The finger tips were not numb or tingling though, which is what some people experience towards the end of a BEP chemo schedule.
– I’d had some unusual and sudden chest pain which I didn’t know the cause of
– I’d found it increasingly more difficult to be out in the sun on hot days. Even being in a car when it was hot outside was quickly tiring and uncomfortable.

Cycle 3 had been rough and I was glad to have gotten through it. With my full chemo schedule now over, I was ready to start rebuilding and repairing. It was great to be at this point. I didn’t know how long it would take to start feeling normal again, but I’d take each day as it comes.

BEP Cycle 3 Days 19-20

Saturday 2 – Sunday 3 August 2019

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

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

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

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

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

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

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

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

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

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

BEP Cycle 3 Day 18

Friday 2 August 2019

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

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

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

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

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

BEP Cycle 3 Day 17

Thursday 1 August 2019

I was feeling good when I got up. I took it fairly easy during the morning, spending time writing the blog and speaking to my mum on the phone. We headed out just after 1 pm. We dropped by a local shop to buy some chicken feed, but unfortunately that was closed when we got there, so we continued on to Bristol.

It was a nice day out. We arrived at the hospital a little early, so we first visited the pharmacy to collect my prescription from the day before: sixty injections of Clexane that would keep me going for a month. I was hoping that my consultant would let me stop the injections early, but I didn’t know yet if that would be the case. I’d ask at my next appointment in a week’s time.

We walked up to the TYA day chemo unit and just had to wait a few minutes for the nurse to be ready for me. When she was ready, I sat down and she explained what she was going to do.

My PICC line undressed. The line is running through the orange clip and the clip is embedded in my arm with two metal hooks.

She removed the dressing from my line. Then she took the cap off of the orange clip.

The line removed, clip remaining

With the clip free of its cap, the line could then be smoothly pulled out of the vein. This caused quite a funny sensation in my arm, not uncomfortable, but amusing. It was interesting to see just how long a piece of plastic had been occupying my vein.

Cutting the clip into two pieces

After that, the clip was cut in half lengthways. Each half of the clip had one hook embedded in my arm. The idea then was to twist each half of the clip in such a way that its hook would manoeuvre itself comfortably out of my arm. However, that was easier said than done. The nurse tried several approaches, but the hooks were not coming. She said that the hooks can sometimes become tangled (with each other) and she was a little concerned about trying to force them out in case she did me any damage. In the end, she called on one of the PICC team to help, the same person who had put my line in almost two months earlier. After a good look, she pressed down with some gauze pads on the site of the hooks and then yanked them out one after the other. They came quite easily using that method and only caused a small moment of pain, a bit like ripping off a plaster.

The metal hooks which had held the clip in place

The amount of bleeding from the wound was very small, but I was to keep a dressing on it for a couple of days. I was also told not to use my arm in any vigorous way for a few days, not to swing it around or lift anything heavy while the wound was healing.

Treatment over and line out, it felt good to be finishing my chemo schedule

It was a great feeling to have the line out, even better than when I’d finished my last chemo session the day before. I felt so liberated, which was elating! I knew I would still have the chemo drugs in my system for a while and that I had a lot of recovery to get through, but having the PICC line out made the treatment feel somewhat complete.

We drove home and I set about preparing some dinner while Pia planted some seedlings in the garden. I made another jackfruit dish, this time with a more spicy sauce. We ate it with spiralised courgette from the garden. It turned out very nice, so I’ll have to make it again.

Pia went out to a yoga class in the evening. I wrote bit more of the blog and then walked to meet her after the class. When we got home I was very tired. I tidied up the kitchen a bit and then went to bed, falling asleep straight away. It had been an exciting day and a wonderful experience to be at the end of my treatment.