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 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!

BEP Cycle 1 Day 16

Wednesday 19 June 2019

I woke up with quite a bit of hair on my pillow this morning. It’s getting easier to pull it out each day. A fair bit more came out while showering and drying my hair (gently), after which there remained a layer of loose detached hair on the surface of my fixed hair. Hairs from that layer were inclined to fall everywhere, making washing and drying my face an extended activity.

I had another day chemo session in the afternoon, so Pia and I took another journey to Bristol. The session went fairly swiftly. I had my PICC line redressed and some blood was taken for a full blood count. Then I had half an hour of IV saline, some hydrocortisone and then half an hour of Bleomycin. It was finished off with a bit more saline.

Second day chemo in progress

The nurse looking after me was called Susie and she had a lot to do with the Penny Brohn charity which I had learned about from Julie the day before. Susie also had a lot of knowledge on more holistic therapies and dietary practices that could help in treating cancer, so it was great to talk to her. She’s the only person in the NHS we’ve spoken to so far that has mentioned anything other than surgery and chemo. Anything else seems taboo.

My chest felt a bit funny on the way home, which it had also done after the previous week’s day chemo. I’d been slightly nervous as to how the evening would pan out after having received Bleomycin in the afternoon, but fortunately I has no fever and slept well.

BEP Cycle 1 Days 14-15

Monday 17 – Tuesday 18 June 2019

I wasn’t feeling too bad on Monday, but I was quite tired and took it fairly easy. I stayed in bed most of the day. My eldest daughter was home from school with a snotty cold. I tried not to get too close so as to avoid catching anything.

I had a bit of energy towards the end of the afternoon, so I dug a hole in the garden in which to bury the chicken which died the previous week. We buried her and filled in the hole before dinner.

This was also the day that I noticed that I was able to pull out hair quite easily. I could grab a small amount between my fingers and it would pull out without any hassle. Some bodily hair also pulled out quite easily.

I was feeling fairly good on Tuesday morning, so I went to a Qi Gong drop in class in the morning. That was quite good, but a couple of times I needed to take a quick sit down and drink some water. I managed fairly well though on the whole and it was nice to have gone out to do something. Pia came to meet me afterwards and we shared a pot of fresh ginger tea before going home.

I had a nap in the afternoon. While I was resting, Pia had a lady called Julie round who she was teaching to make water kefir. Pia has been making kefir for years and had offered a lesson in an auction of promises fundraiser for the girls’ school.

Interestingly, Julie has also recently been through a similar journey to me with cancer surgery, metastasis and chemotherapy. Pia came to wake me up, so I came to the kitchen and chatted for a while. That was quite a nice coincidence and it was great to speak to her. She recommended that I get in touch with a charity called Penny Brohn, which provides a lot of support to cancer patients and their families and carers.

My hair, by the end of Tuesday, was definitely coming out more easily than a day earlier. I was wondering how quickly that would develop!