Post-BEP Recovery

I apologise, dear readers, for my lack of communication these past several months. You may think that I completed my course of chemotherapy and went happily on my way. While that is true, it did not turn out to be the end of my story. I shall endeavour to fill you on what you have missed during the last 10 months and let you know how things are progressing for me.

The last day of my final BEP chemotherapy cycle was 5 August 2019. I had hoped that the following week would see me feeling somewhat better and more energised, but I was actually still extremely tired and had to take it quite easy most of the time, napping most days. I gradually felt less and less tired over the next few weeks, but it was a slow process. Although I became more and more physically capable, I became tired easily and still had occasional bouts of faintness for a couple of months. It just takes time.

I had to continue taking blood thinning injections twice per day for a month after chemo, which was unpleasant. My belly was getting bruised, sore and lumpy. I started having to inject in other spots that were in better condition, usually in the side of the glutes.

The stinging in my urethra continued for two or three weeks, as did the tinnitus, before gradually subsiding. I still had issues doing certain things with my fingertips a month after chemo finished, but that gradually improved. My finger nails actually got worse before they got better (half of one of my thumb nails actually snapped off after a couple of months). It took a good 9-10 months for the damaged parts of the nails to grow out. Although I had no issues with my toe nails at the end chemo, one of them has since appeared to be damaged in the same way that my finger nails were and I can’t see that growing out for quite a while.

After about three weeks, I noticed some definite facial hair reappearing, but it was thin and soft, unlike regular stubble. Likewise, when I started getting some more growth on my head after a few weeks, it was very soft, like that of a newborn. As it grew, it also proved to be much more curly than usual. After a first proper cut, several months later, the curliness returned to normal.

A bit of downy fuzz after seven weeks
Curly first growth, five months after chemo finished

One thing which I hadn’t expected, is that I started to forget what I was saying half way through saying it. I would often start explaining something to someone only to stop mid way through a sentence with absolutely no idea how I intended to continue, even though I had known exactly what I was going to say when I started speaking. This happened quite often and was both frustrating and at times embarrassing. The worst of that occurred during the first 6-7 months post-chemo, but it is still happening occasionally today.

Things slowly started getting back to normal. I’d say that on the whole, I felt more reasonably capable of getting through a day of normalish activities after 2-3 months (with some exceptions).

BEP Cycle 3 Day 21

Monday 5 August 2019

As it was the last day of cycle 3 (and indeed the last day of my entire chemo schedule!), I had hoped that I would have been feeling as good and active as on the last days of cycles 1 & 2. However, I was actually very tired and had some feelings of sickness as well. I’d woken quite early and couldn’t get back to sleep which didn’t help. I ended up staying in bed for most of the day and napped a fair amount.

So the last day of my nine weeks of chemo was not that exciting, but it was great to have the girls back from Finland and spend some time with them, and Pia made some excellent roast potatoes for lunch (home grown potatoes) and a really good mushroom risotto for dinner.

Cycle 3 had been much tougher than cycles 1 & 2. Side effects had tended to be stronger and I had a lot more tiredness and sickness. I was very glad that I didn’t have to start another cycle and hoped that all the drugs I’d loaded into my system over the past couple of months were having the desired effect.

Here’s a quick recap of what I’d experienced during cycle 3:
– Tiredness was more intense and more common than in previous cycles and I’d been sleeping a lot more
– Headaches were still occasional, but stronger than previously
– Feelings of sickness had become regular and I’d been taking Metoclopramide for it most days
– I’d had some proper nausea this cycle, though I’d not vomited at any point
– Bouts of tinnitus had been longer and stronger, but didn’t cause me any real bother
– I had a slightly raised temperature after having Bleomycin on day 9, which I’d also experienced in the two previous cycles, but my temperature didn’t exceed 38C
– As per cycles 1 & 2, I lost my voice a little a couple of days after my inpatient stay, but it was not as obvious as on cycle 1
– The heavy feeling in my chest had gotten worse, but I was still able to breathe normally
– The cough I’d developed during cycle 2 had gotten progressively worse and I was struggling to get through anything more than a short sentence without having to cough
– The nerve-like pain in the back of my right forearm and wrist disappeared after my PICC line was removed
– I’d not had any further discomfort in my right upper arm, so I imagined that the blood thinning injections must have been doing their job. The downside of the injections was that they were less comfortable to administer than the Filgrastim shots, and I was getting a very bruised, swollen and lumpy belly.
– The stinging in my urethra had continued unabated and felt quite bad more frequently. I was trying not to let it bother me, but it was not exactly easy to ignore.
– My eyebrows had been gradually thinning out and although I’d not lost them, it was clear towards the end of cycle 3 that they were nothing like the dark bushy brows that I usually had. Likewise my eye lashes had thinned out significantly and there were some gaps of up to around 6 mm between some individual lashes.
– The nails on my thumbs, index and middle fingers were noticeably discoloured and ridged. It was sore to press on or pull with the finger tips, so there were a number of simple tasks like opening tub lids which became difficult. The finger tips were not numb or tingling though, which is what some people experience towards the end of a BEP chemo schedule.
– I’d had some unusual and sudden chest pain which I didn’t know the cause of
– I’d found it increasingly more difficult to be out in the sun on hot days. Even being in a car when it was hot outside was quickly tiring and uncomfortable.

Cycle 3 had been rough and I was glad to have gotten through it. With my full chemo schedule now over, I was ready to start rebuilding and repairing. It was great to be at this point. I didn’t know how long it would take to start feeling normal again, but I’d take each day as it comes.

BEP Cycle 3 Day 16

Wednesday 31 July 2019

I was feeling quite good on waking, but still felt that I needed to take an anti-sickness tablet, so I had a dose of Metoclopramide. This afternoon was to be my final day of chemotherapy treatment, one last dose of Bleomycin. My PICC line was also due to be taken out following the chemo, which I was very pleased about. Although it had been a convenience during treatment, it was a bit of an obstacle at times, had given me a blood clot for which I had to take uncomfortable injections twice a day, and I would be glad to be rid of it.

I spent most of the morning writing in my diary and doing a few other bits and pieces. I also spoke to my sister for a while on the phone. At some point during the morning, I was sitting in the front room and Pia came rushing downstairs as she’d heard a frantic clucking in the back garden. She ran to the back door and I went to the front. When I opened it, I saw a guilty looking ginger cat on the driveway, next to the path at the side of the house. The cat quickly cleared off once it saw me and I went out onto the street to see if Lucy had been chased there. I walked up and down but couldn’t see her. When I came back to the house, I went to the back garden and Lucy was there. She’d been chased from the end of the garden, over a fence and all the way up to the house where she had taken refuge on the kitchen window ledge. She was looking quite shaken, but she let me pick her up and carry her back down the garden, which is very trusting of her as she doesn’t usually like being handled. We closed all three chickens in the run for a while. As soon as we did, we could see that the ginger cat had re-emerged from one of the back corners of the garden, so we scared it off.

My chemo appointment was for 15:00, and we headed off about 13:30. The drive was pretty easy and we were there 20 minutes early, so we dropped into the M&S at the hospital’s main entrance to get something to eat (we’d had a late breakfast, but no lunch).

Happy to be getting my final chemo treatment over and done with

The treatment all went smoothly and I was all smiles, glad the be on my final day of treatment. Unfortunately, I was not able to have my PICC line removed as I was on blood thinners. There needs to be a minimum gap of twelve hours between taking anti-coagulant medication and having a PICC line removed, and I’d had my last shot of Clexane just seven hours earlier. If I had known, I’d have skipped my morning injection, but nobody had told me about this requirement. The nurse who I’d had for my first day chemo treatment, in the TYA (Teenage and Young Adult) day chemo unit, happened to be in the room and she said that she could take the line out for me the next day if I could come back around 3 pm, so we agreed to do that. Before we left, my chemo nurse also sent a prescription down to the pharmacy for me to collect another 30 days worth of Clexane injections. We decided to collect them when we returned the next day.

We stopped at the supermarket on the way home to get a couple of things. I then whipped up a fresh zhoug sauce to have with the left over falafels from the night before.

It was great to have the chemo over with, very elating. I now just couldn’t wait to have my line removed – that would make it feel more complete!

BEP Cycle 3 Day 9

Wednesday 24 July 2019

It was a very hot day, possibly the hottest of the summer so far, and I was feeling exhausted, sick and unstable – not good at all. The chemo from my latest inpatient stay had really hit me hard, much more than either of the previous cycles. I tried to sit outside a couple of times during the morning, but I didn’t last more than a minute or two in the heat before feeling quite unwell and needing to lie down in the shade.

Sitting outside in the shade, not looking too bad in the picture but actually feeling pretty horrendous

One thing that sometimes helps with the feeling of sickness is eating something solid. As on many other mornings, Pia made me some porridge with organic berries and coconut milk, and that helped to settle my stomach a bit, for a little while at least.

I had an appointment for day chemo in the afternoon. Since my drug schedule had recently been messed up, having been a day behind my appointment schedule last week, I wanted to ensure that my Bleomycin for the afternoon’s session had been prepared for me before I made the trip to Bristol. My specialist nurse was off, so I couldn’t get hold of her. I tried to call the day chemo unit several times, but nobody was answering there. Eventually I spoke to someone from the chemo appointments team and they passed me onto one of the pharmacists. The pharmacist told me that I should be fine to come in for 3 pm, but she’d double check that my drugs had been prepared and would call me back if there were any issues.

I was feeling really rough and wasn’t coping too well. I really just wanted to curl up into a little ball and disappear for a while. However, I managed to take a shower, which I absolutely needed, and I got dressed.

Just before we left, I had a call from the pharmacist to say that there was actually a problem and that my drugs had not been prepared. It seemed that the dates on the drug charts in my patient notes had been updated, but this had not had the knock on effect of updating the pharmacy’s schedules accordingly. So twice now my chemo drugs had not been prepared in time for my appointments – I was glad I’d called ahead to check. Fortunately, the pharmacist said that she could have the Bleomycin prepared for me on an urgent basis, so I could still come in. If it wasn’t ready for 3 pm, it would be sometime soon after, which was fine given that it wouldn’t normally be infused until almost an hour after my appointment began.

I felt pretty awful during the car journey, worse than on any other journey we’d made during my chemotherapy. The heat didn’t help, even though we had cool air pumping through the vents. I started to feel what was probably the closest to proper nausea I’d had so far. For the first time during my chemo treatment, I felt as though I might actually have to vomit and held onto a plastic bag, just in case.

Pia dropped me off at the BHOC entrance, as I wasn’t going to be able to walk very far and we usually had to park a fair distance away. I walked up to the day chemo reception desk where I had to lean on the counter and clearly must have looked a wreck, as the receptionist had to ask how I was feeling and if I was ok. I sat in the waiting area for a few minutes, most of the time leaning forward with my elbows on my knees.

When my chemo nurse came to collect me, I told her how horrible I was feeling. As I wasn’t feeling good, she wanted to check a few things before starting any treatment. She took my blood pressure, pulse and temperature, which were all ok, and she asked me a number of questions. She also wanted to make sure that I felt capable of seeing through the day’s session before we commenced. I just wanted to get it done. I had my PICC line redressed and some blood was taken to check my full blood count. Everything on the FBC came back looking alright.

Sitting back as still as possible with my eyes closed during chemo

It was cooler inside the hospital and I started to feel a bit less unwell after being sat there for a while. After Pia arrived, having parked the car, I was hooked up to an IV pump and got started on some saline and hydrocortisone. I spent most of the next hour with my eyes closed, not quite asleep, but not far off. I just sat back as still as possible. After half an hour, I started the Bleomycin, which infuses over 30 minutes. Then I had 15 minutes more of saline, after which I was able to leave.

By this point I was feeling much improved on when I’d arrived, but still pretty poor. Fortunately it had cooled down a little outside. I waited by the hospital entrance while Pia fetched the car, then we drove home. The drive home felt a lot easier than the earlier drive to the hospital.

When we got home, I lay down in bed. I’m not sure that I actually slept, but it was close enough. I came downstairs in the evening and we ate on the sofa before going to bed.

As per day 9 of cycles 1 & 2, my temperature did rise a bit during the evening, a known side effect of Bleomycin. When I went to bed, it was about 37.5 C, having risen from closer to 36 C. It then went up to almost 38 C, but had come down again when we checked it later during the night (Pia had set alarms so that we could wake and check it every so often). Other than for waking to check my temperature, I slept quite well.

This had been the hardest day so far and I’d felt awful all day, but particularly during the trip to the hospital. I think this was all the cumulative effect of the chemo drugs in my system, really hitting me hard. I did wonder how long this would last and how much worse it could get, but it was no good dwelling on such things. I’d have to take each day as it comes.

BEP Cycle 3 Day 4

Friday 19 July 2019

I was feeling very lethargic and a bit sick in the morning. I just wanted to lie still. I had Clexane, Omeprazole and Metoclopramide around 9 am. I turned down hospital breakfast when it was offered, eating a banana a bit later on instead.

I spent most of the morning either sleeping or lying very still, not feeling good at all. Pia arrived around 13:00. I continued sleeping for a while.

Lying still, feeling tired and sick

I couldn’t handle going for much of a walk. I did however get up and dressed and we walked down to the hospital’s main entrance to get some food from M&S. It was much more of an effort than the day before, but this was also the case on the third day of inpatient treatment in cycles 1 & 2, so I was getting kind of used to it.

We came back to the ward and I had my steroids. We ate a little and then I was hooked up to the IV pump for my final inpatient chemo session. It took just a little over two hours to complete. We headed home after that with another party bag of drugs, this one including 30 Clexane injections to keep me busy for the next 15 days.

Starting on my final inpatient chemo treatment – nice to be getting towards the end of it all

It was nice to get home. Pia’s mum had been a great help in looking after the girls all week. As it had been the girls’ last day at school for the year, they had cleared their desks and brought home lots of bits and pieces including all of the artwork they had done throughout the year. We had a look through some of that during the evening, which was nice. Very impressive!

As I’d been feeling so tired and unwell all day, I didn’t waste too much time in getting to bed. I slept well.

BEP Cycle 3 Day 3

Thursday 18 July 2019

I woke around 5:20 and couldn’t get back to sleep, despite feeling very tired. For around ten minutes I got a stitch-like pain in my right side which I hadn’t experienced before. It didn’t cause too much distress though and went away fairly easily.

A nurse came in quite early to check my blood pressure, temperature, etc, and to take some blood from my PICC line – no blockages this morning! My mum called a bit later and I spoke to her for a while. After the night shift nurses handed over the day shift nurses around 8 am, I was brought my morning Clexane injection, Metocolopramide and Omeprazole.

One of the doctors wanted me to have another chest x-ray, so my nurse called ahead and arranged it with the radiology team. I got myself up and dressed and headed down one floor for the x-ray. It was all pretty quick. I was feeling quite tired and fragile, but I coped ok.

I spent the next few hours sitting in bed, reading a bit and trying to progress with writing the blog, which I was about three weeks behind with. I had visits from a nurse, who pricked my finger to check my blood sugar levels, and a doctor, who just came to see how I was getting on.

I had a bit of hospital food for lunch: broccoli, peas, carrots and potatoes. Pia arrived not long afterwards. It was a beautiful day and we went for a walk up to the university gardens and sat there for a while. We then walked a bit further and dropped into a couple of shops before heading back to the ward. I was feeling quite a bit more capable than I had been in the morning.

Heading out for a walk. I was staying in a room just to the right of the top window in this picture.

We were back by 16:00. I was given my Dexmethasone dose for the day and was hooked up to my IV pump around 16:30 for the day’s chemo, which consisted of:
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

Pia and I ate a bit. She had brought me some rice and vegetables from home. Some hospital food also arrived, so I had some of that too: vegetable pie, potatoes and some other veg. We watched a film together and then Pia left shortly after 19:00.

The second day of inpatient chemo is always a long tiring session. I was quite tired but spent most of the evening awake, trying to add to the blog. I was utterly exhausted by midnight and tried to sleep as the final two-hour bag of Bleomycin was being infused. I was disconnected from the IV pump a bit after 2 am, and slept well after that.

BEP Cycle 3 Day 2

Wednesday 17 July 2019

I felt pretty decent waking up. I made a glass of citrus juice and ate a banana. I was going to call the hospital at 8:30, but they called me first to ask how soon I could come in. Given that I had a lung function test booked for 13:30, chemo wouldn’t be able to start until after that. We decided that I’d come in around midday so that they could take some blood and things, then I’d go for the lung function test.

We headed off about 10:30 and had a fairly easy drive in, except for some delay in Bristol due to an Extinction Rebellion protest blocking a busy intersection near the hospital. We found a parking space in the first place we looked, which was good. Parking is generally quite difficult around the hospital.

When I got up to the ward, I found that they had given me the same private room that I’d had in cycle 2, which was a nice surprise! The nurses got started by trying to take some blood from my PICC line, but nothing was coming. It seemed that there was a blockage in my line, so they took blood via a needle from my other arm instead. I was given a shot of fluid into my PICC line to resolve the blockage.

With a blockage in my PICC line, blood had to be taken the traditional way from my other arm

Pia and I wandered down to another part of the hospital for my lung function test. It was basically a repeat of the test I had done six weeks earlier. The physiologist said that the results looked fairly normal and quite close to those in my baseline test. I’d largely expected that, as despite having a heavy chest and a lot of coughing, I was still able to take full deep breaths without any problems.

Breathing in and out of a tube as part of the lung function test

On the way back to the ward, we stopped at the little Marks & Spencer store to get some food. Once back, I had my PICC line redressed and I was given my premeds: Akynzeo and Dexmethasone. I was also visited by one of the germ cell oncologists who I had not met before. He had a good bedside manner and was pleasant to talk to. When I mentioned to him how I could trigger the nerve pain in my right forearm by pressing on my ear, he could not think of any explanation, but he said that cisplatin can sometimes affect nerves in an unusual way.

Chemo got started around 16:30

I ended up having to wait a while for chemo to get started. I was finally hooked up around 16:30 for the usual day 1 routine:
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

Pia and I watched a couple of films as the treatment got going. I was also brought some hospital dinner consisting of lentil pie, peas, carrots and potatoes. Pia left a bit after 19:00 and had a fairly easy drive home. I was feeling pretty exhausted by this point, but listened to a couple of podcasts and watched a docu-film while the treatment progressed. One of the nurses brought me my evening Clexane injection around 21:00.

As per cycles 1 & 2, I was making a lot of toilet trips and filled several bottles for the nurses to take away. I was finally detached from my IV pump shortly after 1 am and went to sleep quite easily after that.

BEP Cycle 2 Day 16

10 July 2019

It was another warm and sunny day. I was feeling much the same as the day before, quite tired but not too bad. My cough was about the same as it had been the day before. I had another day chemo session in the afternoon so we drove to Bristol after lunch.

Heading up to the day chemo unit on the fifth floor

As it was quite a hot day, the hospital was a bit stuffy and they’d had to open the windows. Some of the patients looked a bit uncomfortable. I was ok though.

My session went fairly smoothly. I had some blood taken and my PICC line redressed, then I was connected to the IV pump for just under an hour and a half.

Receiving Bleomycin via the IV pump

As usual after receiving Bleomycin, my chest felt a bit heavier on the way home and during the evening. I took it fairly easy until bed time.

BEP Cycle 2 Day 3

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

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.