BEP Cycle 3 Day 9

Wednesday 24 July 2019

It was a very hot day, possibly the hottest of the summer so far, and I was feeling exhausted, sick and unstable – not good at all. The chemo from my latest inpatient stay had really hit me hard, much more than either of the previous cycles. I tried to sit outside a couple of times during the morning, but I didn’t last more than a minute or two in the heat before feeling quite unwell and needing to lie down in the shade.

Sitting outside in the shade, not looking too bad in the picture but actually feeling pretty horrendous

One thing that sometimes helps with the feeling of sickness is eating something solid. As on many other mornings, Pia made me some porridge with organic berries and coconut milk, and that helped to settle my stomach a bit, for a little while at least.

I had an appointment for day chemo in the afternoon. Since my drug schedule had recently been messed up, having been a day behind my appointment schedule last week, I wanted to ensure that my Bleomycin for the afternoon’s session had been prepared for me before I made the trip to Bristol. My specialist nurse was off, so I couldn’t get hold of her. I tried to call the day chemo unit several times, but nobody was answering there. Eventually I spoke to someone from the chemo appointments team and they passed me onto one of the pharmacists. The pharmacist told me that I should be fine to come in for 3 pm, but she’d double check that my drugs had been prepared and would call me back if there were any issues.

I was feeling really rough and wasn’t coping too well. I really just wanted to curl up into a little ball and disappear for a while. However, I managed to take a shower, which I absolutely needed, and I got dressed.

Just before we left, I had a call from the pharmacist to say that there was actually a problem and that my drugs had not been prepared. It seemed that the dates on the drug charts in my patient notes had been updated, but this had not had the knock on effect of updating the pharmacy’s schedules accordingly. So twice now my chemo drugs had not been prepared in time for my appointments – I was glad I’d called ahead to check. Fortunately, the pharmacist said that she could have the Bleomycin prepared for me on an urgent basis, so I could still come in. If it wasn’t ready for 3 pm, it would be sometime soon after, which was fine given that it wouldn’t normally be infused until almost an hour after my appointment began.

I felt pretty awful during the car journey, worse than on any other journey we’d made during my chemotherapy. The heat didn’t help, even though we had cool air pumping through the vents. I started to feel what was probably the closest to proper nausea I’d had so far. For the first time during my chemo treatment, I felt as though I might actually have to vomit and held onto a plastic bag, just in case.

Pia dropped me off at the BHOC entrance, as I wasn’t going to be able to walk very far and we usually had to park a fair distance away. I walked up to the day chemo reception desk where I had to lean on the counter and clearly must have looked a wreck, as the receptionist had to ask how I was feeling and if I was ok. I sat in the waiting area for a few minutes, most of the time leaning forward with my elbows on my knees.

When my chemo nurse came to collect me, I told her how horrible I was feeling. As I wasn’t feeling good, she wanted to check a few things before starting any treatment. She took my blood pressure, pulse and temperature, which were all ok, and she asked me a number of questions. She also wanted to make sure that I felt capable of seeing through the day’s session before we commenced. I just wanted to get it done. I had my PICC line redressed and some blood was taken to check my full blood count. Everything on the FBC came back looking alright.

Sitting back as still as possible with my eyes closed during chemo

It was cooler inside the hospital and I started to feel a bit less unwell after being sat there for a while. After Pia arrived, having parked the car, I was hooked up to an IV pump and got started on some saline and hydrocortisone. I spent most of the next hour with my eyes closed, not quite asleep, but not far off. I just sat back as still as possible. After half an hour, I started the Bleomycin, which infuses over 30 minutes. Then I had 15 minutes more of saline, after which I was able to leave.

By this point I was feeling much improved on when I’d arrived, but still pretty poor. Fortunately it had cooled down a little outside. I waited by the hospital entrance while Pia fetched the car, then we drove home. The drive home felt a lot easier than the earlier drive to the hospital.

When we got home, I lay down in bed. I’m not sure that I actually slept, but it was close enough. I came downstairs in the evening and we ate on the sofa before going to bed.

As per day 9 of cycles 1 & 2, my temperature did rise a bit during the evening, a known side effect of Bleomycin. When I went to bed, it was about 37.5 C, having risen from closer to 36 C. It then went up to almost 38 C, but had come down again when we checked it later during the night (Pia had set alarms so that we could wake and check it every so often). Other than for waking to check my temperature, I slept quite well.

This had been the hardest day so far and I’d felt awful all day, but particularly during the trip to the hospital. I think this was all the cumulative effect of the chemo drugs in my system, really hitting me hard. I did wonder how long this would last and how much worse it could get, but it was no good dwelling on such things. I’d have to take each day as it comes.

BEP Cycle 2 Days 17-18

Thursday 11 – Friday 12 July 2019

I was quite tired on Thursday and took it pretty easy. I was a bit tired and sluggish on Friday as well.

I had an appointment with an oncologist on Friday morning to discuss how I was getting on with the chemo, now that I was near the end of cycle 2, and to have bloods taken to check my tumour markers and full blood count. The oncologist was quite happy with how I was getting on, on the whole, however she was a bit concerned about my cough and the heavy feeling in my chest.

Bleomycin is known to affect the lungs, but we wouldn’t want it to affect my lungs too much. She said that she would arrange for me to repeat the lung function test to see if there had been any degradation. If there was, beyond a certain amount, they would consider stopping giving me Bleomycin. As I’d taken the plunge with chemotherapy and already come this far, I didn’t really want to stop taking something that might be helping to halt the spread of cancer cells. Despite the cough, I was still able to take deep breaths quite easily, so I was fairly confident that the results of the lung function test would be close to normal.

I also asked about the stinging in my urethra. As I’d already had two urine tests which came back negative for infection, the oncologist said that it was probably just a chemo thing. Although it felt quite unbearable at times, I’d been starting to get to grips with it, trying to treat it as a sensation rather than judging it and experiencing it specifically as pain.

Once we got home in the afternoon, I went into the garden to try repotting a couple of plants, but I was quite exhausted and didn’t get very far before having to head inside for a rest. By Friday evening I’d started perking up. We had some friends coming down from London to stay the night, arriving around 8 pm. I decided that I’d get busy in the kitchen and cook some dinner to be ready for when they arrived.

I decided to make a jackfruit curry. We had a few tins of young green jackfruit, but I’d not cooked with it before. I used a recipe for a swede curry as my base and referred to a recipe for jackfruit tacos to ensure I cooked the jackfruit element of it in a suitable way. It turned out pretty well, but I think it could have used some more spices to give the jackfruit a bit more flavour. Everyone enjoyed it.

Jackfruit curry in progress

I stayed up quite late in the end, and was exhausted again by the time I got to bed.

BEP Cycle 2 Day 16

10 July 2019

It was another warm and sunny day. I was feeling much the same as the day before, quite tired but not too bad. My cough was about the same as it had been the day before. I had another day chemo session in the afternoon so we drove to Bristol after lunch.

Heading up to the day chemo unit on the fifth floor

As it was quite a hot day, the hospital was a bit stuffy and they’d had to open the windows. Some of the patients looked a bit uncomfortable. I was ok though.

My session went fairly smoothly. I had some blood taken and my PICC line redressed, then I was connected to the IV pump for just under an hour and a half.

Receiving Bleomycin via the IV pump

As usual after receiving Bleomycin, my chest felt a bit heavier on the way home and during the evening. I took it fairly easy until bed time.

BEP Cycle 2 Day 9

Wednesday 3 July 2019

Today was another day chemo day. My arm was still bothering me a lot in the morning, so I called my oncology team’s emergency number. They asked if there was any redness, or if my arm was hot or firm. There was no redness and my arm felt more soft and tender than hot or firm. They said I didn’t need to come in and see them, but that I should be sure to mention the issue to my day chemo nurse in the afternoon.

My day chemo appointment was at 14:00. I was very tired on the drive to Bristol and I wasn’t very talkative. We arrived on time and I checked in for my session. I was called in almost immediately.

I explained how I was feeling to the nurse. She had a good look at my arm and asked a number of questions. Then she got one of her colleagues to come and have a look. They were concerned that one of the veins in my forearm was popping out a bit, which could indicate too much pressure in the area. That particular vein has always stuck out a long way so I wasn’t sure that it was telling us much, but I’d been feeling that my forearm was a bit heavy and wondered if it was slightly swollen. The nurse had a quick chat with someone from the PICC team and they arranged for me to go for an ultrasound scan as soon as my chemo had finished. This would be to see whether there were any signs of blood clots in the area of the PICC line, which can easily occur.

Having the dressing on my PICC line changed

I had some blood taken and the dressing on my line was changed. My treatment then proceeded with half an hour of saline, some hydrocortisone, half an hour of Bleomycin and fifteen more minutes of saline. That all went smoothly. We then legged it down to another part of the hospital for the ultrasound.

I only waited a few minutes to be seen. The sonographer started by checking a vein in my neck, then moved into the shoulder area and continued down my right arm, along the PICC line. What they do when checking for blood clots is to press on the suspect vein in several places. A healthy vein should be able to squish flat and bounce back to its normal shape easily, whereas a vein containing a blood clot will not flatten when pressed.

The ultrasound scan started with a vein in my neck, then proceeded down my right arm, along the PICC line

At the end of the scan, I was told that there was a clear clot along the length of the line in my upper arm, which would need some attention. I headed back to the day chemo unit to let my nurse know what the outcome was. She took me upstairs to the acute chemo ward. This is where chemo patients would visit after calling the oncology emergency line, if there was an issue that needed immediate attention.

I waited a short while and then saw a doctor who asked me a number of questions and had a look at the sonographer’s report. I wasn’t sure what the remedy would be for my clot, but I half expected that my line would be removed.

Instead, I was prescribed blood thinners: two subcutaneous injections a day of the anti-coagulant medicine Clexane, of which the active ingredient is enoxaparin sodium. Like filgrastim, these were to be self-administered. I’d take the shots twelve hours apart. It wasn’t clear exactly for how long I would need to continue taking them, but the doctor indicated that three months is fairly standard. That sounded like overkill to me, but the doctor said that I’d be able to figure it out with my consultant.

I mentioned to the doctor that I was still getting fairly severe stinging when urinating. For this I gave a urine sample which was checked for infection, but none was present. I wasn’t sure whether the chemo was damaging the lining of the urethra or whether perhaps the stinging was due to the intense expulsion of toxins, but either way it seemed like something I’d just have to put up with.

The doctor sent a prescription down to the pharmacy for me. I left with a sharps bin and Pia and I headed to the collect the prescription, which contained two weeks worth of injections.

The ultrasound and visit to the acute ward and pharmacy had lengthened our stay in Bristol somewhat and it was around 20:30 when we got near home. We collected our younger daughter from a friend’s house on the way home. Then Pia headed out again to collect our older daughter from another friend’s house. I was feeling quite worn out and sick by this point and my arm was hurting. I didn’t waste much time in getting into bed.

My temperature started to rise a little in the evening, which worried me as I was so tired and didn’t fancy another emergency trip to hospital. We checked it a couple of times and it was under 38 celsius. I couldn’t stay awake any longer so let myself drift off to sleep. Later in the night we checked my temperature again and it had gone back down, so panic over.

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 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.