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.
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.
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.
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.
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.
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.
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.
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.
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.
I’d slept better after day two than after day one. However, I was feeling more exhausted in the morning. I also felt uncomfortable in the tummy. It wasn’t proper nausea, but it was a feeling of sickness. I dozed a bit throughout the morning.
I was asleep when Pia arrived around midday. When I noticed she was there, I tried to get up a bit but I wasn’t feeling so good. I slept for another hour or two, then we had something to eat. I started to feel a bit better after that.
I got dressed and we went outside for a walk. We found a beautiful garden which is part of the local university. It was really nice to walk around and see the different plants and art installations. It was also nice to get some fresh air and a bit of sunshine. We stayed out for about an hour, then I returned to the ward and had a shower to be fresh for the final chemo session of my initial stay as an inpatient.
So how does one manage to shower without getting one’s PICC line wet? The hospital didn’t provide a solution for this, but fortunately I’d found one in advance: A LimbO Waterproof Protectors PICC line cover. This is a waterproof sleeve which covers the upper arm and forms a tight seal at both ends. It doesn’t let any moisture through at all. If you’ll ever be needing a PICC line for any reason, get one of these as well. It makes showering a much easier experience.
My day three chemo session was much shorter than the previous two days. In advance I took some Dexmethasone, Omeprazole, Metoclopramide and also some chewable calcium carbonate, as calcium had come up as being a little low in my latest blood work. The chemo ran smoothly and lasted around two and a half hours altogether:
Etoposide – 500 ml over one hour Etoposide – 500 ml over one hour Saline flush – 10 minutes
After that, I was given a party bag of drugs to take home and one of the nurses talked me through it. It contained:
Dexmethasone (steroids) – to take for three days post-chemo Omeprazole (for acid-reflux) – to take with dexmethasone Metoclopramide (anti-sickness) – to take as required up to three times per day Chewable calcium carbonate – to take for two days post-chemo Filgrastim (pre-filled syringe to stimulate white blood cell production) – to inject daily for seven days post-chemo Benzydamine Hydrochloride (mouthwash for ulcers or other mouth irritations) – to take as required Docusate Sodium (for constipation) – to take as required Loperamide Hydrochloride (for diarrhoea) – to take as required
I was pleased to be on my way home after that. I was also feeling a lot better than I had been during the morning, though still tired. The drive home was nice and smooth. I’d expected, given the chemo fluids and all the water I’d been drinking, that I might need a toilet stop along the way (and I’d taken one of the hospital’s cardboard bottles, just in case!), but fortunately I made it all the way home with my bladder still intact.
It was great to be home with Pia and the girls. Peter had also cooked up a splendid risotto, which was delicious and became something of a craving for me over the next few days. I happily got into bed soon after eating and slept well all night (only four toilet trips).
After something of a patchy sleep, I woke about 6:30 for the toilet. I lay awake for a little after that then sat up sometime soon after 7:00. The nurses did their handover about 8:00 and I had my blood pressure, pulse and temperature taken. I was offered some breakfast, but I settled for a banana which I had with me and a cup of green tea.
After that I got to meet the chap in the bed next to me called Dave. He’d had a rough day the day before, which is why I hadn’t already had the chance to speak to him. He was a really nice guy though who was very chatty when he was able. It’s nice to have someone to talk to.
I wasn’t feeling too bad in the morning, but very tired and a bit fragile.
I had an appointment for a lung function test at 10:15, so I got myself washed and dressed and headed off to another block of the hospital. The lung function test took about 20 minutes and involved breathing in and out of a monitored tube which had a snorkel-like mouthpiece. One exercise looked at overall lung capacity and strength of exhalation, and another on gas transfer time. Both tests came out with fairly normal results. I expect that I will perform these tests again at the end of my chemotherapy treatment to see if I’ve deviated from this baseline at all. Bleomycin can affect the lungs, so I imagine it’s common for patients to experience some short-term degradation.
I was feeling quite alright after that, so I headed up to the hospital restaurant on the top floor and found a table next to a sunny window to sit down at. I had a smoothie and some green tea, and I pulled out my laptop and made a start on writing this blog (at the time of writing, I’m almost three weeks behind!).
I went back to the ward after a bit. Pia came to meet me about 13:00. She’d brought food, so we ate a little. Around 14:00 the nurses gave me some Dexmethasone (steroids), Omeprazole (which helps with acid reflux whilst on steroids) and Metoclopramide (an anti-sickness drug). I also had the dressing on my PICC line changed, as it was looking a little messy from having been put in the day before. With the PICC line, I was given a PICC Passport, which is a log book that is written to each time the PICC is cleaned, dressed or altered. Cleaning and redressing needs to be done every week. This works out to be quite easy for me, as I’ll be having either inpatient or day chemo every week anyway, so no extra trips to the hospital will be necessary.
My brother, Peter, who had come to look after the children while I was in hospital and Pia was spending a lot of time with me, had decided to take them to Airhop, a trampoline park in Bristol, during the afternoon, so he and the girls dropped into the hospital on their way. Pia and I met them at reception and we went for a walk into Bristol. I don’t know Bristol very well, so it was nice to have a wander around. We had a look around an indoor market and stopped to grab a cup of tea (green for me) before heading back to the hospital and saying goodbye.
Despite being quite tired, I managed the day quite well. No pain or nausea. I got started on my chemo session around 16:00. Today’s menu was:
Etoposide – 500 ml over one hour Etoposide – 500 ml over one hour Saline – 1000 ml over one hour Mannitol – 400 ml over half an hour Cisplatin – 500 ml over one hour Electrolyte solution – 1000 ml over two hours Bleomycin – 250 ml over two hours
So it was basically the same as for day 1 but with the addition of Bleomycin.
The bag changes were a bit slower than the night before and the session finished after 3:00 am. I was quite knackered by the time Pia left around 20:00. I started watching a film, but didn’t get very far before I could no longer concentrate. I managed to snooze a bit during the last couple of bags, which was good. After that, I managed to sleep quite solidly for the rest of the night (between toilet trips).
I had a bed in a room with three other gentlemen, all of whom looked to be in their seventies and were in far more serious states of health than me. Two of them were receiving radiotherapy treatments and were suffering with a lot of pain and nausea. I don’t know what the third gentleman was in for, but he was on some pretty heavy opioids which made him quite disoriented and forgetful at times.
Before my chemo started, I was given some preliminary drugs. I had one Akynzeo capsule, which is an anti-nausea drug that remains active in the system for five days. I was also given six Dexmethasone steroid tablets. These can help with nausea and inflammation.
After waiting around for a while, I was hooked up to a drip around 16:30. My IV fluids for the session were:
Etoposide – 500 ml over one hour Etoposide – 500 ml over one hour Saline – 1000 ml over one hour Mannitol – 400 ml over half an hour Cisplatin – 500 ml over one hour Electrolyte solution – 1000 ml over two hours
At the end of some of the allotted durations, some of the bags still had a little left in them, so a few minutes were added to ensure that all of the fluids had been used. With that extra time, plus the time it took to change the bags, the entire session took around eight hours and finished after midnight.
Bag change times can be variable as it depends who is available to do it. Any nurse is able to change a regular bag of fluids, but two nurses are required when a bag containing chemo drugs is being put in place. The nurse administering the chemo needs to be specifically qualified to do so, and a second nurse is required to check that everything is correct: the correct patient, the correct drug, the correct volume and rate of flow. Consequently, they are continually asking patients to confirm their names and dates of birth.
All of the extra fluid in my system meant having to visit the toilet frequently, roughly once every 500 ml, in my estimation. When doing this, I needed to unplug my IV pump machine from the mains (it has a battery which can handle several hours of use on a single charge) and wheel it to the bathroom with me. Then I had to urinate into a cardboard bottle and leave it for the nurses to collect. They would then measure all of my fluid outputs to compare against my fluid inputs, to ensure that enough was passing through.
Pia and I had slept less than six hours the previous night and had not had very long sleeps on the previous few nights, so we were both quite tired by the time the chemo started. I felt more and more tired as it progressed and had some headachy symptoms, but nothing too bad. I’d brought my laptop with me so we were able to sit on the bed and watch some films while the fluids were going in. Pia left about half way through the session, before she got too tired for the drive home. After she’d gone, I just felt like sleeping, but remained awake until I was disconnected from the drip.
Once the session was complete, about half past midnight, I fell asleep straight away. I woke up about two hours later to go to the toilet. I had a dry mouth and felt a bit disoriented. I couldn’t get back to sleep after that, so I put on headphones and listened to a couple of guided meditations, which were relaxing. I dropped off again a couple of hours later, after another toilet visit. Between the IV infusions and drinking a lot of water, toilet visits are becoming quite a major daily activity!
Since deciding to pursue chemotherapy, I’ve felt confident in its ability to help me and I take full ownership in following this path. It’s none-the-less a strange feeling waking up on the first morning knowing what lies ahead. I suppose it could be a bit like setting out on a mountaineering expedition with equal measures of optimism and awe at the scale of the awaiting adventure. Having had less than six hours sleep, Pia and I left the house around 8:30 for the hour-and-a-quarter drive to the hospital.
My first appointment was for a PICC line placement at 10:00. PICC stands for “Peripherally Inserted Central venous Catheter”. It is essentially a narrow tube, up to around 60 cm long, which is inserted into a vein under the bicep. The line terminates in a larger vein in the chest (hence “central venous”) and allows for chemotherapy drugs and other fluids to enter the body, via a drip, and for bloods to be taken.
There are a couple of advantages to using a PICC line. The first is that some of the chemo drugs, notably Etoposide in my case, can be damaging to the veins, and there is less risk of damage to the veins in the arms if a PICC line is used rather than a cannula. The second advantage is one of convenience and comfort. Having a PICC line in for the course of the treatment (9 weeks for me), prevents the need to be continually punctured and bruised every time I make a visit to the hospital. Some hospitals do not have a PICC facility and so don’t offer lines to chemo patients, however it’s a standard part of the process for BEP chemotherapy at the Bristol Haematology and Oncology Centre (BHOC).
The line was put in under local anaesthetic. Having it put in was probably the only thing I’d not been looking forward to, as I’ve never been great with needles or having things inserted into veins. However, there was no discomfort whatsoever in having it placed. Even having the anaesthetic injected was barely noticeable. It took about half an hour or so complete. After the line was in, some blood was taken to be tested for tumour markers, full blood count and liver and kidney function.
Following that, we headed up to the chemo ward to talk about the treatment with a nurse and go through a lengthy questionnaire. I was then sent for a chest x-ray. Pia and I then grabbed some lunch before heading to the audiology clinic to have my hearing tested. This was done to establish a baseline against which my hearing can be measured again after treatment. Chemo can cause some degradation in hearing in some cases, and tinnitus is a common short-term side effect. It can also, but rarely, be a long-term side effect.
We then headed back to the chemo ward, where there was a bed waiting for me in a room with three older gentlemen. After a bit of a wait, the last of my blood results came through (from the samples taken when I had my PICC line put in). I was weighed and had my blood pressure taken. Then I was ready to commence treatment.