I was feeling pretty decent on Saturday, much better than during the previous couple of days.
It was the end of term party for our local Finnish school in the afternoon. Pia set up the school with some other local families a couple of years ago. The school meets for two hours every second Saturday and is an opportunity for bilingual children to keep up their Finnish language skills and explore Finnish culture. There are also lessons for some of the native English speaking parents, including myself.
As it was the end of term party, the format was a bit different, with all of the families together in the main hall. In the morning I’d put together a presentation with the programme for the session including a selection of photos taken throughout the year. I got everything set up and took charge of the projection and sound. I was glad to have been feeling well enough to be doing something useful!
It was nice to spend some time speaking to all of the other people there once the main part of the session was over and the food and drink came out. I was tired by the time it was all over and we’d packed up. I’d had a pretty good day though.
On Sunday, however, I wasn’t feeling quite so good and stayed in bed most of the day. I got up and went out for a walk in the evening which was refreshing, but it had been a harder day than the day before.
Today was my eldest daughter’s twelfth birthday. She’s an amazing young woman!
I woke around 5 am and couldn’t go back to sleep. I went downstairs and lay on the sofa for a bit, then got up and did some final present wrapping. Pia got up shortly afterwards and whipped up a batch of pancakes as a surprise birthday breakfast. After breakfast and present unwrapping, the girls got off to school.
I was feeling a bit sick and went to lie down, spending most of the morning in bed. I managed to get up and do a few bits and pieces after that, but I was feeling pretty exhausted and a bit headachy until late afternoon.
However, Pia and I managed to transform our daughter’s bedroom into a little boudoir cinema, as she was bringing some friends home after school for some birthday celebrations and a film. We borrowed a video projector from some friends and set it up to project onto a wall of her room, turning it into a nice big screen, and I hooked up a loudspeaker. It all went down pretty well!
I was feeling a bit off during the morning after my first session of day chemo. Tired, in my bubble and generally a bit weak and unstable. That picked up a bit as the day went on.
My dad and his wife came a few hours out of there way to visit me, which was very nice. They couldn’t stay for very long as they had a five hour onward journey to get through, but it was great that they were able to drop in and that we had some time to catch up.
I got a bit of a lift in the late afternoon and set about making cauliflower soup for dinner. Although I didn’t pull off the recipe quite perfectly, it still tasted pretty good.
I felt fairly reasonable for the rest of the evening, probably the best I’d felt since starting chemo. One thing I started to notice though was some stinging in my urethra, when urinating. I wasn’t sure if that could mean an infection or whether it might be down to chemo drugs and toxins passing out of my system.
Monday the tenth of June was my birthday. I was woken to an amazing fruit salad and a delicious loaf made of oats, apple, carrot, sultanas and maple syrup.
Amazing birthday breakfast
I was feeling tired, but fairly good in the morning. I had an appointment at 9:00 so I headed out to that, after which I spoke to my mum on the phone, and a few other people. Then I settled down to write to my integrative physician, as I had a few questions about my supplemental protocol.
As I got into the afternoon I was starting to feel a bit under the weather, slightly dizzy and light headed. We had to pop out briefly after collecting the girls from school, as we needed to get some medicine for a sick chicken. We kept two chickens in the back end of the garden, but one of them had started gasping and hadn’t been looking well for a couple of days. It looked like it could have been down to a type of worm, so we drove to a farmers’ supplies store to get some worming medication. Whilst at the store I found that I was feeling more and more unstable, so I was glad to get home and chill out for a bit.
Pia mixed the worming medicine with some chicken food and tried to feed it to our sick bird. Unfortunately she promptly died.
When it came time for dinner, I tried to sit at the table but started feeling unwell after a minute or two and had to lie down on the sofa. I was eventually able to eat whilst slouching. I even had some incredible frozen dessert which was made from blended cashew nuts and homemade berry sorbet.
Beautiful birthday dessert
After eating some of this, I started to feel shivery, which I thought may have just been from having eaten something cold. However my temperature had risen to over 37 C. Whilst I would not normally blink an eyelid at this, I knew that an elevated temperature in a chemo patient is a cause for concern as there’s a risk that it could be caused by an infection. Chemo patients often have low white blood cell counts, in which cases infections can be particularly dangerous if not treated immediately.
I monitored my temperature and it went up to 38 C, then down a little, then back up over 38 C again. At this point I called my oncology team’s emergency number. They advised me to get in to see them straight away. Unfortunately it would have taken me an hour or more to reach them in Bristol, so we agreed that I would go to accident and emergency in Bath as it would be less than half the journey time.
It was after 23:00 at this point. One of our friends came over shortly after to stay with the girls and Pia drove me through dark wet roads to Bath. We arrived after midnight.
When I got to reception, I found that the nurse I had spoken to in Bristol had called ahead to Bath to let them know to expect me. They were all ready and I was walked straight through to a bay in their high care section. My temperature had already started to come down at this point, but they wasted no time in treating me on precaution for neutropenic sepsis, a condition in which a patient’s neutrophils (the white blood cells which act as the body’s first line of defence) are depleted and there is suspected infection. This meant an intravenous dose of high-strength antibiotics and some other IV fluids. Despite having a PICC line, the nurse dealing with me insisted on sticking a cannula in my wrist. It was nicely done but perhaps unnecessary.
Being treated for neutropenic sepsis in A&E at RUH Bath
After several hours in A&E, I was sent for a chest x-ray and then moved to the hospital’s chemo ward where they had found a bed for me for the night. The good news was that my neutrophils had a phenomenal reading of 7.5 (anything above 1 is considered adequate) and signs of infection were normal. This was by far the highest my neutrophils had been since I’d started having full blood counts taken a few weeks earlier. I’m sure it was down to the Filgrastim injections that I had been taking since day four of the cycle.
Pia drove home after I’d settled down, around 5:00. After getting home, she didn’t get much rest before having to get up and get the girls ready for school. I slept a little, but not much, and was pretty exhausted in the morning.
Looking pretty weary after a long night
Around mid morning, one of Bath’s consultant oncologists came to see me. He was happy that I could go home and said that I’d done the right thing to come in and get checked out, given my symptoms. He suggested that the fever may have been a side effect of Bleomycin.
After a nurse had removed my cannula, Pia came to collect me, a bit after midday. We got home and had something to eat. I was fortunate enough to be able to have a sleep on the sofa after that, but Pia had to head straight out to collect the girls and go to town for an appointment.
After I woke, a whole comedy of errors ensued after our last remaining chicken was chased out of our garden by a predatory neighbourhood cat, and ended up running along the road trying to find a safe haven. I was feeling quite delirious but was home alone and had to try to deal with the situation myself. It took some time, and involved me losing my glasses in the overgrowth of a vacant lot, but I eventually managed to get our chicken back to safety (and then recover my glasses). I won’t go into any more detail, but it was one of those ridiculous scenarios in which whatever could go wrong, did go wrong. A happy result at least.
When Pia got home she was utterly exhausted. We were all in bed by 21:00, badly in need of some rest.
I slept in until about 9:30 on my first day back from hospital. After getting up I had a look through my bag of drugs and accompanying info to figure out my medicinal schedule for the days ahead.
I had a nice bowl of oatmeal with rehydrated dried fruits for breakfast. While I’d previously been eating a diet consisting mostly of fruit and vegetables, much of it raw, and a lot of freshly pressed juice, I was beginning to get more of an urge to eat foods higher in carbohydrates: oats, rice, potatoes and the like. Chemo patients often lose a good bit of weight during treatment, and especially while energy feels low, some extra carbs are not a bad thing.
I spent the day at home, pottering about and not doing anything more than I could easily manage. I lay down when I needed to. I was mostly tired and had a feeling as if I was somehow in a little bubble or cloud, preventing me from feeling normal. I don’t really know how to better describe that. At some times I felt a bit more groggy than at others, but I was coping ok. My voice also started to disappear a bit as the day progressed.
The next day, Saturday, I didn’t feel quite so good. I’d mostly slept alright, but did have a period of awakeness during the night after one toilet visit. I felt quite a bit more groggy than the day before and made sure I took a dose of Metoclopramide. My voice was almost completely gone. I didn’t have any throat pain or anything, but just couldn’t get out much volume. The rest of the family was heading out for a couple of hours during the afternoon, but I opted to stay home and rest.
I was a bit perkier on the Sunday, but felt a little light headed most of the day and still in my bubble. My voice had recovered a bit, but was still a little off. My triumph for the day was honouring a DJ slot that I’d booked for an open decks session at a local music venue during the afternoon. I’d booked it a couple of weeks earlier with the idea that I should fairly easily be able to get someone to cover for me if I wasn’t feeling up to it.
Mixing Motown in my Guns’n’Roses t-shirt
Rather than play my usual kind of set for this event of carefully crafted house/disco/funk, I decided to play a selection of 60’s tunes, predominantly Motown, which didn’t require too much concentration to mix. As it happened, nobody was booked to play the slot after me, so I ended up playing a full 90 minutes of Diana Ross, Marvin Gaye, Aretha Franklin and The Four Tops, amongst many others. There wasn’t much of an audience, but the rest of the family and a couple of friends came down which was nice. It was also a good opportunity to catch up with some other local DJs, so I’m glad I managed to make it.
I was quite worn out and still feeling a bit weird after I’d finished, so I walked home slowly with the kids and then chilled out for the rest of the day.
The first three days at home had been a bit variable, but I felt like I was getting a feel for living with chemo.
A Journey Through Cancer 