Two Steps Forward, Eight Kicks Upwards

There are many symptoms for brain tumours in adults (see here), most (if not all) of which are symptoms for other ailments too. As brain tumours are relatively rare, with around 10,600 people in the UK diagnosed each year, happily, most of the time the symptoms will not be due to a brain tumour but please make yourself aware of them to get checked out if necessary!

Today, as I mentioned in my last post, is The Brain Tumour Charity’s #WearItOut kick-off day for Brain Tumour Awareness Month. Here is my Picture In A Frame wearing the bandana that J decorated, along with a strange interloper wearing the same:

More Than A Seizling*

With an average of a seizure a day over the last few weeks, with perhaps one or two Doozies/Snoozie Doozies a week, I’ve had shorter and less painful seizures overall compared to even just a month or two ago.

To recap:

  • I started five days of Temo the Chemo on Wednesday 22 Feb.
  • I had a Doozie on Thursday 23 Feb.
  • I then went three days without a seizure until Sunday 26 Feb when I had a Meizure.
  • Also on Sunday, I finished the five days’ tablet-taking for this first cycle of chemo.
  • I then had, on average, one Meizure/Inbetweizure a day until yesterday.
  • On Wednesday 1 March, I reduced my steroids dose by 0.5mg to 3.5mg daily, as directed.
  • I was feeling pretty good on Wednesday.

Yesterday, however, I had a strange day to say the least. Having rested/slept in the morning, I felt refreshed and good after lunch. At about 3pm, we went for a family trip to Whickham to look at carpets (now, I know it’s hard but don’t be jealous of the exciting lives we lead here in Rowlands Gill!). With Graham pushing the wheelchair next to me, I decided to walk from the car to the shop (about 20 – 30 yards). As I took a step about 10 yards from the shop entrance, I tried to put my right foot down (in the manner one usually does to walk!), but my foot and lower leg just lifted up from the ground and a seizure started. I had no warning or Seizlings, it literally came out of nowhere, and that has never happened while I have been standing, let alone taking a step!

Thankfully, as Graham was right behind me, he reached out to stop me falling down and help me into the wheelchair for the seizure to run its (Doozie) course. After it finished, I had no movement/strength in my foot but, as I was in my wheelchair, I actually felt ok, bizarrely so given how quickly the seizure came on and that it was a Doozie.

Don’t Stop The Seizin’

I had a further seven Meizures yesterday evening, overnight and this morning. They again came on without any warning signs and with the same “we have lift-off” gravity-defying kick-off (except that I wasn’t standing for the start of any of the Meizures, thankfully). I felt ok, and sometimes even “good”, immediately before and immediately after each seizure, apart from the temporary inhibited mobility caused by each seizure as usual.

Graham rang my Specialist nurse team earlier today who rang back having spoken to my Oncology and Neurology Consultants. As a result, the Steroids are back up to 6mg daily for a few days and then will be reduced again from Monday. Two of my three anti-seizure medications have gone up slightly too, including the addition of an extra “drug slot” at 2pm. The timetable I set out in Clockwork Cocktails is already out of date!

The nurse Graham spoke to said it’s a “rare” side effect for Temo to increase seizure activity, even for patients with ongoing seizure issues. Of course, we can’t be certain that it was the chemo that caused the seizures to increase suddenly in frequency. What is certain is that my chart in A Donkey’s Tale (Part Two) is out of date now too!

Question Time

It’s around nine hours since my last seizure and I’m feeling relatively good. I’m a bit more tentative than usual about walking even the few feet from my bed to the bathroom. While I had not pinned down any pattern for the seizures, I generally thought I had a handle on possible/likely triggers, the most common one being tiredness and fatigue. However, I was definitely less tired yesterday than on many days when I haven’t had any seizures at all so it’s just a bit unpredictable and perplexing to say the least….

Further, I had, until yesterday, a short period of time (often just five or ten seconds) during the Seizling period and before the seizure started in earnest. This has usually been enough time to get into a seizure-friendly position with assistance. The fact that the seizure started almost in full swing without any warning is a new phenomenon.

I have the following questions, which are rhetorical given that my consultant admits to the multi-discipline neuro team being “intrigued” by my ongoing seizure symptoms:

  1. Is this the “new normal” way that seizures are going to kick off?
  2. What caused the sudden upturn in seizure frequency – the steroid reduction programme I was on; the back-end of my head cold (even though I was given a clean bill of health in that regard by my GP on Wednesday); a rare side effect of Temo (in which case, is that caused by the Temo reaching the tumour and battering it, to which the tumour is fighting back in a classic Good vs Evil fight?); and/or, any one of a number of other factors that could be relevant?!
  3. Was the fact that I took some extra steroids and anti-seizure medication between 1 and 2pm today all or part of the reason why the seizure storm has, temporarily at least, blown away?

Having pondered these and other questions about things big and small this afternoon, I’m now going to relax before bedtime by watching the second part of the light-hearted and epic Oscar-winning documentary “OJ: Made in America”. The first part was brilliant but I will hold back on a full recommendation until I’ve watched all 12 hours or so!


*See my Seiziodic Table in a previous post for definitions of seizure terms used!


3 thoughts on “Two Steps Forward, Eight Kicks Upwards”

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