It’s been just over six weeks since Mr H’s Halloween hewing of the habitant in my head. Tomorrow it’s the turn of Dr M’s radiotherapy team to launch a six-week assault on the Squatter.
I’m hoping that Roger Taylor was right when he wrote that:
You had your time, you had the power
You’ve yet to have your finest hour
Radio – radio
Earlier today, Graham and I met with my consultant neurologist, Dr A. You might recall, if you’ve been paying attention, that I was referred to him after the seizures were still averaging once a day despite the cocktail of drugs I have been on. Dr A’s remit is to come up with a balanced cocktail of anti-seizure medication to reduce the frequency of my episodes and, if possible, to cease the seizures completely.
To recap, I am currently on four anti-seizure drugs. One of those drugs, phenytoin, is about to be kicked to the kerb to eat my bubbles as I’m being weaned off it as we are not sure what my body was doing with it but it wasn’t doing exactly what it said on the tin. I’ve been taking my current doses of two of the drugs, levetiracetam and clobazam, for about six or seven weeks now. The last drug to join the party, lamotrigine, has been on the guest list for just over four weeks, with the dose going up gradually, and on Sunday I reached the halfway point in the original ramping-up plan.
Dr A has decided not to alter the plan with regards to the phenytoin, the levetiracetam and the clobazam. Dr A described the lamotrigine as a drug that acts in slow motion (much like myself these days). Whereas the original lamotrigine schedule had my daily intake increasing by 25mg every two weeks, with the aim of reaching 150mg daily, he’s accelerated the updosing (is that a word? I rather like it) by increasing my daily intake by 25mg twice a week. He’s also increased the target dose to 300mg daily. It’s a practical Maths puzzle (albeit an easy one) as to whether the updosing rate that’s four times faster will reach the doubled up target dose quicker than I would have reached the lower target at the original rate. Answers on a postcard (showing your workings) please.
In addition to the lamotrigine conundrum, he looked at my recent CT scan on screen and decided that the amount of swelling warranted me going back on steroids. The seizures are being caused by my tumour and the swelling around it, triggered by tiredness, movement and/or unknown factors, so anything he can do to reduce the swelling is, in Dr A’s words “the best anti-seizure drug available to him”.
So that is why I’ll be taking an extra six tablets tomorrow.
Jennifer wrote her first letter to Santa the other day (generously agreeing to write on behalf of Leo as well). It was partly to tell him what they wanted for Christmas and partly to inform him that they’ll be here at my folks’ house rather than at home. She had asked the other day how Santa would know we are here. Although, I wonder at times whether she’s just humouring us as she mentioned to Graham a couple of weeks ago that Santa’s not real.
Over the last few days, in addition to our trip to the RVI today (with a lunch at Subway for old time’s sake), we’ve managed a quick visit to Gibside and another trip to the Metro Centre for some shopping. I honestly have no idea how I’ll be feeling throughout the radiotherapy saga so we have been trying to make the most of times when I’ve been feeling relatively ok. Options for making the most of it are limited with me not being able to walk far at all so we need wheelchair-friendly places. Plus, I feel tired regularly and always lurking is the potential for seizure-ville kicking off at any moment.
However, it’s the simple things that bring the most pleasure. Cuddles and conversations with J, and watching how much Leo is coming on, have been more frequent over the last week so I’ve taken that as a bonus. I’m frustrated that I can’t do more with and for them, but that’s not to say that I’m not grateful for the moments I have with them. I love watching them play together and, in particular, how Leo’s face lights up when he sees Jennifer. I hope that they’ll be as close as me and my brother were. The early signs are promising.
On that happy note, I’ll bid you Good Night, and Good Luck.