I started the day feeling pretty good. I walked the girls to school and then went for a Bodytalk session for an hour. Once I was home, Pia and I ate some porridge and then headed into the vegetable garden.
I was feeling a bit tired and slow by this point, but still managed to pull some weeds from each of the vegetable beds. There were quite a few weeds, but they all reasonably small and came out fairly easily. Pia set about harvesting the garlic which we had planted in the autumn. She counted no less than 90 bulbs!
A good harvest of garlic that will keep us going for a while
In the afternoon we had a visit from Julie, who we had met when she came around a few weeks earlier to learn from Pia how to make water kefir. It was nice to see her. We sat outside chatting and eating strawberries and watermelon. Pia and Julie went together to collect children from school and I headed into town for a drop in sound healing session which is on every Monday.
On the way home my hayfever started to flair up. It had come fairly late this year, I think as it hadn’t gotten very warm until the end of June. I had a hard time in the evening with a raw nose, snottiness and a headache.
On top of that, I’d been feeling a growing heaviness in my chest recently and had been coughing quite a lot. The coughing was shallow and dry, not much substance to it, but it was interrupting my talking quite a lot. This was quite apparent when I was putting one of the girls to bed and trying to read some stories. I’d often have to cough before I could complete a sentence. It was annoying, but didn’t feel serious.
I got to bed reasonably early, but was quite tired when I woke on Tuesday morning. I had a fairly easy day, spending much of it in bed. I noticed that my cough was getting slightly worse.
The other thing I noticed was to do with the nerve pain in the back of my right forearm and wrist. I had thought that it was triggered by how I moved my right hand, having noticed that I would feel the pain when pressing my right ear with it. What I now noticed was that I could trigger the pain by pressing my right ear with my left hand, so there was some kind of connection between my right ear and the nerve in the back of my right forearm! That was quite a revelation, although I couldn’t start to explain it. I assumed that either the nerves were linked or that there was an acupressure point in the ear that was associated with the area of the nerve pain. Very interesting.
On Sunday morning, Pia had received a message that a chicken matching the description of Lucy had been sighted nearby. When we lost her, she must have gone over the back fence, through the rear neighbour’s garden and across the road, as she’d spent the previous couple of days in at least two gardens over there.
We grabbed a cardboard box and some chicken food and headed over to one of the houses, which was owned by someone Pia knew from yoga classes. We had a good look around the garden and over the fence to the next door neighbour’s garden, but she was nowhere to be seen. Apparently she had been there for most of the day on Saturday, so we hoped that she would be back again later. The couple living there said that they would let us know as soon as they saw her again.
After that, we got ourselves ready and headed into town. The monthly Independent Market was on and we were going to be meeting our friends who had been around the previous evening. The market is quite a big event and always a great day out when the weather is good, which it was. It was hot and sunny and there were loads of people about. We walked about, looking at all of the stalls and shops, then everyone found some lunch from amongst the numerous food options (I’d brought something from home for myself). I bought the girls some fresh lemonade after they’d eaten. We ran into a few people we knew, including one artist that was exhibiting in a small shop/gallery and was spinning yarn from wool on a big wheel when we saw her.
We stayed out for a few hours, after which we said goodbye to our friends and walked home. I’d done pretty well, but was thoroughly exhausted by this point. When we got home I had to lie down and sleep for a bit.
Maybe the highlight of my day was catching up with an old friend on the phone. I’d not been in touch with him for probably close to 15 years. We talked for over and hour which was really nice.
I got out in the garden and gave it a good watering before the end of the day. There had been no further signs of Lucy unfortunately. I hoped she would turn up soon, now that we knew she’d been seen so recently.
I was really tired on Thursday and couldn’t stay on my feet for very long at a time. I ended up staying in bed most of the day, sleeping for some of it. I noticed that I was getting more regular tinnitus, but each burst only lasted 10-15 seconds.
I was feeling a bit better on Friday, in terms of tiredness and general ability to do things. However, I had a very achy back and joints during the morning. I put this down to possibly having been slouching too much during the previous day or two. I stayed on my feet for quite a long time as it was hurting my back to sit down. I alternated between standing and lying flat on my back with no pillow for most of the day, napping on a couple of occasions.
Towards the end of the day the aching in my back eased. I went outside for a little while in the evening and watered the garden.
I noticed episodes of tinnitus quite a lot, as per the previous day. The stinging when urinating had also become quite intense and I felt that I was getting a bit phlegmy.
My chest felt more phlegmy the next morning. It was a hot and sunny Saturday and our friend Stuart had offered to come and help us in the garden. Although I’d managed to mow part of the lawn on a good day a couple of weeks earlier, I’d not been in a fit enough state to take care of the rest of the garden and it was getting a bit out of control.
Stuart brought a trimmer round with him and he started by running it over the grass at the back of the garden to get it down to a reasonable length. I then started to mow over the areas that he had trimmed. In the heat and with my general level of wellness, I was quickly overwhelmed and needed to sit and rest. I got up and down and helped with bits and pieces, but Stuart did most of the work, for which I am very grateful. Each time I got up and did something for a couple of minutes, I started to feel faint just couldn’t stay on my feet. Stuart stayed for 2-3 hours and left with the end of the garden in a much more manageable state than it had been to begin with. It was really nice of him to come around.
After he left, I had to go and sleep for a while. It had all been quite exhausting.
A family we know but hadn’t seen for a couple of years were coming up from Dorset and staying locally for the weekend, so Pia and the girls popped out to meet them in the afternoon. They spent a bit of time in town then visited the nearby Pyle Farm which has an ice cream parlour. I had a shower after napping and everyone came back to ours for dinner in the evening. I was feeling a bit more refreshed by this point.
On the whole it had been an exhausting day, but I’d still been feeling generally better than I had during the previous few days. My arm was also bothering me less, which was a good sign.
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.
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.
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.
A Journey Through Cancer 