On reflection…

#19

I’m still enjoying the psuedoprogression conclusion of blog #18. You’ve got to celebrate the highs and that was definitely worthy of a fist pump. That said, there is a recurring theme of ‘2x steps forward, 1x step back’ in this blog and what I chose not to mention in #18 was another seizure in the midst.

A week after the MRI scan (the one that confirmed pseudoprogression), I spoke to a member of the neurology team who reminded us of the risks taking Clobazam as regularly as I was (10mg, twice daily). Clobazam is designed to be taken in the event of a potential seizure to calm and settle activity in the brain but the more you take, the less effective it becomes. It is also a member of the benzodiazepine family which means it’s potentially addictive.

In light of these facts, I agreed to try another reduction (10mg, once per day). This wouldn’t start until after the chemotherapy pill taking week of cycle #5 (mid May 2019).

Once the dose was dropped, I had 6x days without issue. On the 7^th I had another seizure in Ladywell Park (I really should stop going there). Fortunately, I was walking with my mum and Jo this time so there wasn’t any added pressure of approaching strangers with ‘please help’ cards!

This seizure was a weird one.

We left the house and there was loud music in the air from an event nearby. The sound system was reverberating around as we took the 5/6x turns to the park but it was still impossible to tell which direction the sound was actually coming from. It was changing with the wind and reflecting off the buildings. It was bizarre. We were definitely walking towards the music as it was getting louder. Jo agrees there was an oddity and I wasn’t imagining it.

Once we got into the open space of the park, the music was clearly coming from the left but the whole affair made me feel quite nauseous. I was leading but within steps of being on the grass I felt a sense of confusion and uncertainty – the aura if you like. There were no other symptoms but I told Jo and my mum I needed to sit down.

We have learned that the more information you can give doctors and nurses about your seizures, the better. Despite the potential to panic, Jo had the foresight to start a timer…

17:18 – first sign

17:20 – sat on bench

17:25 – hand started to go numb

17:26 – emergency 10mg Clobazam taken and laid on the floor in recovery position

17:28 – hand tingling/jerking began

Taking deep breaths, I could feel my eyes fluttering behind my eyelids as my right hand was jerking. Jo took a short video…

17:31 – hand stopped jerking. Face began twitching/tingling

17:34 – face stopped tingling. Eyes still fluttering

17:37 – hand still ‘a little’ numb

17:38 – talking, still laying on the floor

17:45 – sitting up

17:48 – standing up/walking

I suffered a focal aware seizure.

In my opinion, the confusion caused by the reverberations and reflections of music caused my brain to misfire electrical signals and cause the seizure. Whether that’s right, I don’t know but it is a potential cause. However, another possible cause was highlighted when I referred to my homemade symptom spreadsheet below. The seizure day is the far right column.

As you can see, the 2x days prior I had been tired and a bit nauseous (FYI at the time of writing (April 2020) I haven’t been physically sick since my very first seizure in September 2018 – nausea here just means a sick feeling/stomach ache).

Probably more significantly, the sheet shows I suffered headaches. I know 5/10 doesn’t sound particularly painful but throughout 12x months of logging, I never scored any headache over 5/10. Maybe I should’ve acknowledged this information but how do you know 2x days of 5/10 headaches might trigger a seizure until you go out on day 3 and have that experience?

Later that evening Jo asked if we stayed at home, did I think the seizure would’ve happened? My answer was no. Headaches and tiredness suggest vulnerability but I maintain the music was the trigger. That doesn’t bode well for a freelance sound engineer does it…?!

We obviously consulted the neurologist via the CNS team and the Clobazam was once again raised back to 10mg, twice daily. It for 2 for 2 in our attempts and for the foreseeable future we abandoned ideas of reduction. 

Those with a keen eye may have noticed (in the video) that I shaved my head. I decided to take the chop at the beginning of April. The hair on the left side of my head was slowly growing back but the receding hairline elsewhere is nothing to do with cancer treatment – it’s just family genes!

I was being slowly weaned off the bloating steroids but the next couple of months passed seizure free and I was encouraged by my tolerance of chemotherapy side effects and general sense of wellbeing.

I started going out which was great (not out out Micky Flanagan style, just out). I went to Sheffield and stayed with my friend Eddie and his family for a few nights. I went to another great wedding, this time with my Leicester friends to celebrate Dan and Danielle’s big day. I saw people I hadn’t seen since this drama began and I was happy to talk about my experiences. I actually found that quite therapeutic to be honest.

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I was becoming more confident with my body and that was undoubtedly helped by a 10x week physical rehabilitation course at the Guys Cancer Centre. The weekly classes cater for a wide selection of people, each suffering with different types of cancer. It was nice to interact with these people and interesting to see how people were dealing with various diagnoses.

For me, it was enjoyable to put my body (more specifically my head) under stress and strain in the safety of the GCC gym. The talented team who work there were very encouraging and after 5x sessions, I felt confident enough to jog my local Saturday Park Run alongside my housemate Scott and Gemma.

This was a real landmark moment for me and moving forward, the weekly Park Run became equally part of my routine as setting a 0745 alarm to pop my first dose of daily pills.

Despite ongoing chemotherapy, I genuinely started to feel like I was getting my life back and it felt great.

Jx