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.
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.
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!
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.
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!
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.
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!
A Journey Through Cancer 