BEP Cycle 2 Days 4-6

Friday 28 – Sunday 30 June 2019

I had slept well but still felt thoroughly exhausted on waking. I also had a sick feeling in my stomach and had some feelings of heartburn. The heartburn/acid reflux is not uncommon when on steroids, which is why I’d been given Omeprazole to take for a couple of days. I had that plus Metoclopramide in the morning, but still felt pretty unwell and uncomfortable. I was also quite unsteady on my feet and couldn’t really stay upright for very long.

I knew I was not likely to have been on top form, having just had three days of intensive chemo, but I had kind of hoped that I’d be feeling a bit more stable, particularly since the Glastonbury Festival was on and we had tickets. Had I not been in the middle of chemotherapy treatment, we would have headed to the festival on Wednesday and set up camp, but there was no way I was in a state for camping, even if I had been feeling generally alright. However, we are lucky enough to live about half an hour’s drive from the festival site, so day trips were still a possibility.

On this occasion though, I was in no fit state for a day trip anywhere. I didn’t even feel like I could walk down the garden without it being a huge effort. It was a beautiful sunny and warm day outside, but I was bed-bound.

Pia and the girls got themselves ready and they headed off to the festival for the day and had a nice time. I spent the day napping on and off, not able to shake the sick feeling in my stomach. When I was awake, I did manage to watch some coverage of the festival on BBC iPlayer, wishing I was there myself.

On Saturday, I was feeling much the same. Tired, sick and unstable. I’d had no improvement on the day before and I certainly wasn’t in adequate festival condition. Pia and the girls headed out again and also gave a lift to a friend of a friend who was on his way to the festival.

I was feeling lousy all morning and a lot of the afternoon. Towards the end of the afternoon, I started to feel a little more capable, but still exhausted. I decided to start building a Lego model that I’d been given for my birthday – a replica Volkswagen T1 camper van. Over a few hours I managed to build about half of it, with Glastonbury coverage on in the background. I perked up a little more in the evening and even managed to get outside and water the garden, which was a big improvement on how I’d been feeling in the morning.

After Pia and the girls were home, we stayed up for a while watching the festival performances by the Chemical Brothers and The Killers, which were great. I really wished that I’d been well enough to be there.

I woke up on Sunday feeling much improved. It was a real contrast to the last couple of days. I wasn’t on top of the world, but I felt vastly better – no real sickness and I was much more comfortable on my feet. I decided that I was well enough to make a day trip to the festival, so we got ourselves ready.

I cooked myself a couple of portions of rice and vegetables to take with us. I knew that there would be lots of food available to buy, but being on chemo and potentially immuno-compromised, I was being a bit careful about what I was going to eat and was much happier taking responsibility for my food myself.

It was another beautiful sunny day, not quite as hot as the previous couple of days, but still very warm. We arrived at the festival in the early afternoon and I had to go through the process of showing my ticket and getting my wristband. The staff were quite surprised to see me present them with a full weekend camping ticket on the last day of the festival, but they were thrilled I’d made it when I explained why I’d not been able to come sooner.

We walked through the festival, past a few of the stages and over towards The Glade. Pia and the girls bought some food and we found a spot to sit down and eat. There were so many good food smells about and I’d loved to have been able to try a lot of what was on offer, but I would be sticking to my own food this time. From where we were sitting, the music we could hear from The Glade was quickly drowned out when Baby Metal started their set on the Other Stage.

After we’d eaten, we walked up towards the Pyramid Stage which was absolutely packed for Kylie Minogue. We managed to find a spot, at quite a distance from the stage, and stuck around to hear her. We then headed over to the Kids Zone and the girls did a few activities there while I could hear the Bootleg Beatles playing on the Acoustic Stage next door.

Fun at Glastonbury, Kylie Minogue in the far distance

We wandered back towards the Other Stage as our twelve-year-old was meeting up with one of her friends to see Billie Eilish. She and Pia made their way into the crowd and I took our younger daughter back to The Glade to have something more to eat. Then the two of us had a wander around and spent some time in the Green area, which had lots of fun stuff going on. There was a big playground shaped like a ship, with a spiral slide and rope bridge. There was also some beatboxing going on, which was pretty impressive.

After Billie Eilish had finished, we all met back up and had a look at a couple of stalls before heading to the exit. It had been a nice day out and I’d managed pretty well. I had taken the opportunity to sit down as often as possible, but I was quite pleased that I’d been feeling so much better and had at least been able to get to one day of the festival.

BEP Cycle 1 Days 17-18

Thursday 20 – Friday 21 June 2019

Hair loss had been getting progressively more intense as the week had gone on. There was more hair on my pillow on Thursday morning than there had been the day before. I was also able to pull larger clumps out more and more easily.

By Friday I knew that it was time to just cut it all off to avoid the mess. So I did that, but not before making a short video about what the hair loss experience is like.

A short video on chemo hair loss

I didn’t shave my head, but Pia used clippers to cut me down to a number one to begin with, then a bit shorter again.

Clipping in progress

We cut it as short as the clippers would allow, then I gave what was left a wash and a good rub down over the bath tub. A lot of small hairs continued to come out as I rubbed my hands over my head. I figured that in a couple more days, they all would have come out leaving me properly bald.

Heading to the hospital, sporting my new look

The next item on my agenda for the day was to get to Bristol for a consultancy appointment with my oncologist. That was a good catch up. We talked about how the treatment had been going and what side effects I had encountered. It turned out that my oncologist was going to be at the Glastonbury Festival the next week, which was cool. We were lucky enough to get tickets for the festival this year, but whilst I’m enduring chemo there would be no way that we’d be camping there as originally intended. Fortunately we only live 25-30 minutes drive from the festival site, so day trips remain a possibility.

I had my usual bloods taken: full blood count and tumour markers. Unfortunately, the only person who could take blood from a PICC line wasn’t there so we had to go for the traditional method of sticking a needle in my arm. I’ve never been a big fan of needles, but with all of the poking and prodding I’d gone through since discovering my enlarged testicle several months earlier, I’d been getting used to them. I also had a urine test in addition to the bloods, as I’d been experiencing stinging in the urethra for a couple of weeks. There was no infection detected.

Before we left the hospital, my specialist nurse introduced another patient to me, a younger guy who would be starting chemo a couple of weeks later. He had a lot of questions and seemed a bit anxious. I started by showing him my PICC line and explained how it worked and what it was like to have put in. Then I talked him through how the chemo would be administered in cycle 1. I think he felt a lot more comfortable after having talked to Pia and I. There was another guy there too who had completed chemo for the same thing a year or so earlier, so he was able to chime in as well.

I was a bit worn out by the time we got home, so I had to rest for a little while. In the evening we visited another half Finnish family that live nearby. They’d invited a few families over for a mid summer party (a very Finnish thing to celebrate). I was feeling pretty tired and slow by this point, but I managed pretty well and had a nice time. We ended up not getting home until after midnight, so not a bad effort!