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 Day 9

Wednesday 12 June 2019

Today was my first day chemo session and my appointment was for 14:30. We arrived on time and found that due to a lack of available chairs, I was having my infusion in the Teenage and Young Adults (TYA) day chemo unit. The unit was quite pleasant, as was the nurse looking after me.

Infusing in the TYA day chemo unit

It had been a week since my PICC line had been serviced, so I first had that cleaned and redressed. Then I was started off with some saline and hydrocortisone before having Bleomycin infused for half an hour. It all went pretty smoothly and we left within two hours of arriving, which was nice.

The satnav took us home via a completely different route to normal. It was very picturesque, but I’m not sure that it was any quicker. I started feeling quite sleepy on the way home.

After dinner I started feeling shivery and decided to get into bed. It wasn’t long before I was shaking somewhat uncontrollably and my temperature was spiking again, up to 38.5 C. It felt like a repeat of two nights earlier and I was dreading having to spend another exhausting emergency night in hospital. At least it was a little earlier in the evening, a bit after nine rather than eleven.

I called my oncology team and they checked the bloods they had from my day chemo visit a few hours earlier. Neutrophils were good at 2.07. We decided that I would try to ride it out, but would come into the hospital if things got any worse during the night, or if I still had a raised temperature in the morning. Fortunately I got to sleep and the fever wore off after a couple of hours. It looked to be a typical reaction to the Bleomycin.

So no emergency on this occasion. Instead I managed to get some decent sleep which was very welcome.

BEP Cycle 1 Days 7-8

Monday 10 – Tuesday 11 June 2019

Monday the tenth of June was my birthday. I was woken to an amazing fruit salad and a delicious loaf made of oats, apple, carrot, sultanas and maple syrup.

Amazing birthday breakfast

I was feeling tired, but fairly good in the morning. I had an appointment at 9:00 so I headed out to that, after which I spoke to my mum on the phone, and a few other people. Then I settled down to write to my integrative physician, as I had a few questions about my supplemental protocol.

As I got into the afternoon I was starting to feel a bit under the weather, slightly dizzy and light headed. We had to pop out briefly after collecting the girls from school, as we needed to get some medicine for a sick chicken. We kept two chickens in the back end of the garden, but one of them had started gasping and hadn’t been looking well for a couple of days. It looked like it could have been down to a type of worm, so we drove to a farmers’ supplies store to get some worming medication. Whilst at the store I found that I was feeling more and more unstable, so I was glad to get home and chill out for a bit.

Pia mixed the worming medicine with some chicken food and tried to feed it to our sick bird. Unfortunately she promptly died.

When it came time for dinner, I tried to sit at the table but started feeling unwell after a minute or two and had to lie down on the sofa. I was eventually able to eat whilst slouching. I even had some incredible frozen dessert which was made from blended cashew nuts and homemade berry sorbet.

Beautiful birthday dessert

After eating some of this, I started to feel shivery, which I thought may have just been from having eaten something cold. However my temperature had risen to over 37 C. Whilst I would not normally blink an eyelid at this, I knew that an elevated temperature in a chemo patient is a cause for concern as there’s a risk that it could be caused by an infection. Chemo patients often have low white blood cell counts, in which cases infections can be particularly dangerous if not treated immediately.

I monitored my temperature and it went up to 38 C, then down a little, then back up over 38 C again. At this point I called my oncology team’s emergency number. They advised me to get in to see them straight away. Unfortunately it would have taken me an hour or more to reach them in Bristol, so we agreed that I would go to accident and emergency in Bath as it would be less than half the journey time.

It was after 23:00 at this point. One of our friends came over shortly after to stay with the girls and Pia drove me through dark wet roads to Bath. We arrived after midnight.

When I got to reception, I found that the nurse I had spoken to in Bristol had called ahead to Bath to let them know to expect me. They were all ready and I was walked straight through to a bay in their high care section. My temperature had already started to come down at this point, but they wasted no time in treating me on precaution for neutropenic sepsis, a condition in which a patient’s neutrophils (the white blood cells which act as the body’s first line of defence) are depleted and there is suspected infection. This meant an intravenous dose of high-strength antibiotics and some other IV fluids. Despite having a PICC line, the nurse dealing with me insisted on sticking a cannula in my wrist. It was nicely done but perhaps unnecessary.

Being treated for neutropenic sepsis in A&E at RUH Bath

After several hours in A&E, I was sent for a chest x-ray and then moved to the hospital’s chemo ward where they had found a bed for me for the night. The good news was that my neutrophils had a phenomenal reading of 7.5 (anything above 1 is considered adequate) and signs of infection were normal. This was by far the highest my neutrophils had been since I’d started having full blood counts taken a few weeks earlier. I’m sure it was down to the Filgrastim injections that I had been taking since day four of the cycle.

Pia drove home after I’d settled down, around 5:00. After getting home, she didn’t get much rest before having to get up and get the girls ready for school. I slept a little, but not much, and was pretty exhausted in the morning.

Looking pretty weary after a long night

Around mid morning, one of Bath’s consultant oncologists came to see me. He was happy that I could go home and said that I’d done the right thing to come in and get checked out, given my symptoms. He suggested that the fever may have been a side effect of Bleomycin.

After a nurse had removed my cannula, Pia came to collect me, a bit after midday. We got home and had something to eat. I was fortunate enough to be able to have a sleep on the sofa after that, but Pia had to head straight out to collect the girls and go to town for an appointment.

After I woke, a whole comedy of errors ensued after our last remaining chicken was chased out of our garden by a predatory neighbourhood cat, and ended up running along the road trying to find a safe haven. I was feeling quite delirious but was home alone and had to try to deal with the situation myself. It took some time, and involved me losing my glasses in the overgrowth of a vacant lot, but I eventually managed to get our chicken back to safety (and then recover my glasses). I won’t go into any more detail, but it was one of those ridiculous scenarios in which whatever could go wrong, did go wrong. A happy result at least.

When Pia got home she was utterly exhausted. We were all in bed by 21:00, badly in need of some rest.