Author: andrewamies

BEP Cycle 2 Day 9

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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 2 Days 7-8

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Monday 1 – Tuesday 2 July 2019

I hadn’t slept well after the day out at Glastonbury. I woke feeling tired and sick. Not as bad as Friday or Saturday had been, but still quite rough. It felt like I was paying for having had a nice day out on Sunday. Had I overdone it at the festival? I didn’t think so, but I was feeling pretty bad, none the less.

The girls were back at school and I hoped that they wouldn’t be too tired after a busy weekend with late nights. I spent most of the day in bed.

A new symptom started bugging me quite strongly during the day. The back of my right upper arm, around the triceps, was very sore. It felt soft and tender, as if it had been punched repeatedly. I’d had a similar feeling about three weeks earlier, so I wondered if it might be something that was cycle related. But I also wondered if it had to do with my PICC line.

At some point during the morning, we heard some intense clucking from the back end of the garden. When Pia went along to have a look, our last remaining chicken, Lucy, was nowhere to be seen. It seemed like she must have been chased over one of the fences at the back of the garden. We couldn’t see or hear her anywhere. Pia had a walk around the neighbourhood to see if she could see any traces, but there were none to be found. She posted a message on a local Facebook group to see if anyone had any information but she didn’t get any immediate responses. We hoped that Lucy might find her way home.

I felt generally a little bit better the next day, but my arm felt worse. My forearm also started to hurt a bit. It felt a little heavy. I looked at my forearms side by side to see if the right was swollen, but I couldn’t tell. I was a bit worried though.

I spent most of the day in bed again, but also sat outside for a while. I mostly wanted to be fairly still as I was uncomfortable and had a slight feeling of sickness.

It was a nice day, so I spent some time lying outside

Pia and I had planned to go to a cacao ceremony and sound bath in the evening, and I still wanted to go even though I was feeling a bit rough. It was walking distance from home, but I didn’t feel well enough to walk that far, so we drove and parked as close as we could. My arm particularly was bothering me the whole way through, but Pia and I both had a nice time.

Before bed I checked my arms again, but couldn’t be sure whether or not there was any swelling. It was really bugging me though.

BEP Cycle 2 Days 4-6

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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 2 Day 3

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Thursday 27 June

I was feeling very tired and a little sick in the morning after having had such a long session the night before. I wasn’t feeling nearly as good as I had a day earlier. I slept on and off during the morning and tried to watch some TV, but couldn’t concentrate on it very well.

Since I’d been disconnected from the IV pump during the night, I’d also noticed something that felt like nerve pain in the back of my right wrist and forearm. This felt like it was being triggered by how I was moving my hand. For example, when trying to insert an earplug into my right ear with my right hand, I would get the pain on bending my finger to push the ear plug in. The pain wasn’t constant though, nor too bad.

Pia arrived around the middle of the day. I had a shower, which was refreshing and we then went for a little walk. I was managing a bit more slowly than the day before, but it was nice to get out.

Feeling a bit rough but out for a walk, exploring an art installation in the park

I was hooked up to the IV pump around 16:00 again and treatment progressed rapidly with nice quick bag changes. Pia and I got away around 19:00 with another party bag of drugs. I wasn’t taking home all of the same things as last time, as I did have a lot left over from cycle 1, but most importantly I had a week’s supply of Filgrastim injections, Dexmethasone, Omeprazole and Metoclopramide.

It was nice to get home. It had been wonderful that Lee had been able to come and stay. The girls had had a great time with her and with her dog who had also come to stay. Lee had planned to drive home the next morning, but instead she decided to try driving in the evening while the dog was a bit more sleepy and would hopefully travel more easily.

Despite having a few toilet visits throughout the night, I slept quite well and it was nice to be back in my own bed.

BEP Cycle 2 Day 2

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Wednesday 26 June 2019

After waking for the toilet at about 5:30, I wasn’t able to get back to sleep, so I did some meditation and some simple yoga sun salutations. Despite having had a short night, I was feeling reasonably good.

I had a bit of hospital porridge for breakfast and spoke to my mum on the phone for a bit. Then I managed to write a bit more of the blog. One of the nurses also came to change the dressing on my PICC line.

Pia came in at around 12:30. We hung around for a bit and then went out for a walk. We stumbled across some interesting little shops, there seem to be some great hidden gems in Bristol. We also dropped into a Pret A Manger for a bite to eat – Pia had a salad and soup, I just had some fruit and orange juice.

After getting back to the hospital I had a dose of Metoclopramide (I’d had my Dexmethasone and Omeprazole earlier in the day). I was hooked up to the IV pump about 16:00 to start the longest of my chemo sessions.

Hooked up to my IV pump for a long chemo session

Pia and I did a bit of self assessment admin, then tried to watch a video from the Human Longevity Project, but we found it a bit serious and tiring for the mood we were in. Pia left about 19:30 and had a smooth drive home. I tried to knock out a few more blog posts after she had left, but was getting weary as the evening wore on. The last bag change was at around midnight and I had Bleomycin for the final two hours. I tried to sleep a bit while that went in. The session finally finished a little after 2 am.

BEP Cycle 2 Day 1

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Tuesday 25 June 2019

I’d had pretty patchy sleep and was tired in the morning. My stomach also felt a bit uncomfortable.

However, I was due to be staying on the chemo ward for the next three days, so I got up and called the hospital at 8:30 to see what time they wanted me to come in. Unfortunately, they had no beds available and said that they would have to give me a call back later to let me know what to do. I spoke to them again around lunchtime and it sounded pretty bleak. They didn’t think they would have a bed available for me in time to make a start. I did feel a bit put out, but I could understand that there are only so many beds and scheduling patients is not an easy task when it’s not known exactly how long some of them will end up having to stay in for.

They gave me another call just before 14:00 and said that they would have a bed later in the evening, so if I could get in as soon as possible, they would get me started on my chemo in another room and then I could move to the bed as soon as it was ready. That was good news and cheered me up.

Arriving at the hospital for my second stay as an inpatient

Pia got me to the hospital just before 16:00 and I was taken to the TYA (Teenage and Young Adult’s) lounge, where I was given my premeds and then hooked up to an IV pump to get treatment started.

Taking my pre-meds:: Akynzeo and Dexmethasone

Pia and I were the only people in the TYA lounge. There was a kitchen, pool table, table football, a juke box and loads of games and guitars and things. We got some music going and played a round of pool and scrabble.

Playing a little pool while hooked up to the IV pump

When my bed was ready, it turned out that I was being put in one of the private rooms in the TYA end of the ward. That was quite nice! More spacious, with a sofa, desk, private bathroom and even a Banksy print on the wall. It was also quite a bit cooler than the four person room I stayed in previously. The sofa is such that it can be used as a single guest bed, as I’m sure a parent often ends up staying overnight when they have a teenager receiving inpatient treatment. I was told that I might be shifted out of the room if they needed it for someone else, but I managed to hold onto it for the duration of my stay.

A private room was quite a surprise!

My treatment protocol was exactly the same as for cycle 1 and took me through until just after midnight. Pia stayed until around 20:00 before driving home. After she left, I tried to get a bit of this blog written, as I was almost three weeks behind! I managed to get a bit done which was a good start, but I was also getting tired and hoped for a good night’s sleep.

This TYA room even comes with a Banksy print on the wall

BEP Cycle 1 Day 21

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Monday 24 June 2019

The last day of cycle 1, and it turned out to be a very good active day for me!

I woke up feeling pretty good. I had a nine o’clock appointment, so I walked the girls to school and then went off to my that. When I got home, I was still feeling pretty good so I cleaned up the kitchen, put on some washing and changed the bedding in our seven-year-old’s room in preparation for a guest arriving. Then I dealt with a chair that needed adjusting.

I was still feeling quite good and felt that I had a fair bit of energy, so I drove the car to the local recycling centre to drop off some plastics and cartons (which are not collected by the council at present). Then I visited Homebase for some DIY bits and pieces and got in some grocery shopping at Sainsbury’s.

When I got home, I was still on a roll, so I put a new blade on our lawnmower (the old one was no longer sharp and quite bent out of shape), and I mowed the back lawn (not including the back end of the garden where we have our vegetable beds and where the chicken lives).

I had such a good active day that I even managed to mow the lawn, something I couldn’t possibly have coped with during the previous week or two

Our friend Lee, who lives near Brighton, arrived shortly after. She had come to stay and look after the girls for the next few days while I would be in hospital and Pia would be spending more time with me. It was so great to see her and wonderful that she was able to come and help out.

Pia and I had booked a parent teacher interview at school, so we went along to that. I was amazed that I’d been managing so well all day, especially after having been so tired the previous couple of days. When we got home, I put our youngest daughter to bed and then went out to water the garden. I’d gotten through so much and done so well, but I was now ready for bed myself. This had been by far the best day I’d had since starting chemo.

Cycle 1 was complete. Here are a few highlights:
– I’d experienced a lot of fatigue
– I’d had moments of feeling unstable on my feet
– I’d sometimes felt delirious
– I’d had some mild headaches, but nothing that I felt required medication
– I’d had fevers on days 7 and 9 of the cycle, requiring one hospitalisation
– I’d lost my voice somewhat on days 4-5
– I’d managed to pull off a DJ set on day 6, despite feeling quite out of it
– I’d experienced a little mild tinnitus, or ringing in the ears, but never for more than 10-15 seconds at a time
– I’d had a heavy feeling in my chest after receiving Bleomycin in my day chemo sessions, but this didn’t impact on breathing
– I’d started getting stinging in my urethra about a week after having finished my inpatient stay and this has persisted since
– I started experiencing hair loss on day 14, which escalated until day 18, at which point I cut it all off
– I’d maintained a good appetite, but was craving more starchy carbs than usual
– I didn’t notice any changes in my ability to taste foods
– I hadn’t had any specific pain or nausea, but I did take Metoclopramide if I ever had a sick feeling around my stomach

I think I’d managed the cycle rather well considering all of the potential side effects that I’d not experienced. My oncologist had told me on Friday that I might even find cycle 2 easier to manage. Well, we shall see!

BEP Cycle 1 Days 19-20

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Saturday 22 – Sunday 23 June 2019

Maybe not surprisingly, after having had a long day and a late night on Friday, I was feeling very tired and a bit under the weather on Saturday morning. I opted to rest as much as I could and spent most of the day in bed, combining a bit of napping with catching up a little on the blog writing (still way behind though).

The girls’ school summer fair was on and I had hoped to go along but I just wasn’t feeling up to it. So Pia and the girls went on their own and had a nice time. Pia brought be back a couple of second hand records she found for a pound or two each: The Beatles Red Album and a compilation of 50’s and early 60’s rock’n’roll, containing a lot of good tracks.

In the afternoon, Pia’s sister, her partner and their little boy came down from London to stay for the night, which was great. I was still resting, so Pia took everyone else out for a couple of hours. I got up when they got back and we set about making dinner. After dinner we played some games before winding up for the night.

My youngest daughter, who almost inevitably ends up in our room at some point during the night, had been sniffly and sneezing before bed, so to spare me from getting any unintentional exposure, we put her to bed with Pia and I slept in her room instead. Since the trip to accident and emergency on day 7 of my cycle, I have been keeping quite vigilant about avoiding any possible exposure to infection.

I woke in the morning to hear a lot of clucking coming from our one remaining chicken. The ginger cat that had chased her out of the garden the week before does not want to leave her alone. I don’t think it intends to do her any harm, otherwise I’m sure it would have done so by now. I think it just wants to chase her. None-the-less she remains one terrified little chicken.

I was still feeling pretty lethargic. The roof of my mouth was starting to feel tender too and I was getting slightly irritated eyes and nose, all signs that hayfever was finally kicking in. I often start experiencing those symptoms a few weeks earlier, but June was only just starting to warm up having been rather mild for the first half of the month.

A children’s festival was being hosted along the banks of the river in town, so we wandered down there after lunch. There were all sorts of activities, most aimed at younger children. There were a couple of more daring fun things to try too, such as a zip line across the river, which our seven-year-old did a couple of times. We ended up at a playground at one end of the festival where there were a number of food stalls and everyone ordered pizzas and burgers and things to eat. I just had a green tea.

I was getting quite worn out and it was time for our guests to get moving, so we walked home. Pia drove her sister and family to the railway station to get their train, while I napped for a bit. It had been quite a tiring weekend, all in all.

BEP Cycle 1 Days 17-18

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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

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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.