I’ve been weaning off the dexamethasone steroids slowly but surely over the last few months from eight milligrams daily. Today is the first day that I’ve not taken any steroids since the middle of December. For the last three weeks, I’ve been on just half a milligram a day. I hope that the removal of this low dose of steroids from my daily regime will not have any adverse effects.
Someone asked me yesterday what the steroids are/were for; several people have asked whether they are the same type of steroids as those used by some drug cheats in, for example, athletics and cycling. Taking the second question first, the answer is no. I’ve therefore not been guilty of doping for all of those competitive sports I’ve taken part in recently. Phew!
As for the first question, the dex has been prescribed to reduce the swelling in my brain. Swelling has been caused by the tumour itself, radiotherapy, surgery and possibly by the ongoing seizure activity (the latter is my guess whereas the other causes have been confirmed by various members of my Brainy Brain Bunch). Just like any other part of the body, blood rushes to the site of any trauma, injury or irritation. The dose of steroids was increased immediately before the two surgeries and steadily reduced afterwards. Due to the side effects of dex, the doctors don’t like people being on a high dose for too long and will reduce the dose to the minimum required. The side effects include sleeplessness (I definitely suffered from this), muscle wastage (although I’m not certain that I had any muscles before that could be wasted!) and extreme pangs of hunger. The Steroid Baby initially needed so much food that I was eating regularly during the day and night as old-timers might remember from blogs gone by.
My Consultant Neurologist prescribed the steroids again in December as a quick-fix anti-seizure drug. At the time, he was slowly increasing my daily dose of anti-seizure drugs but they wouldn’t take effect until a few weeks after I’d reached the desired dose. Dr M, my Consultant Oncologist, disagreed that the amount of swelling showing on my scan was sufficient to think that reducing it by steroids would give any particular anti-seizure benefits. She said, however, that the dex would help to reduce the swelling caused by the radiotherapy that I had just started. She was, however, keen to reduce them as soon as possible after radio finished. (I’m now on chemo tablets that don’t generally cause swelling so I should be able to manage without steroids unless and until the swelling increases due to another reason, the most likely being that the tumour has grown.)
Hope that clarifies the steroids situation. I forget sometimes that the vast majority of people are thankfully unfamiliar with the daily ins and outs of brain tumours, treatments, drugs and side effects. Apologies if I use jargon or terms without explaining what they mean. I’m willing to take more questions but can’t guarantee that my answers will be accurate!
Chillin’ Out Maxin’ Relaxin’ All Cool
After a weekend one-woman Sleepfest (a bit like Carfest but without the cars, music, crowds and celebrities), I’ve been less tired over the last few days. I have mainly been resting in the house and catching up on Versailles and Last Tango in Halifax. Regarding the latter, thanks to everyone who recommended it: I love it and have been totally addicted to it in between the snoozing and seizing! Any more recommendations for shows to watch?
I haven’t been outside since Friday, partly because of tiredness but also because it looks a bit miserable weather-wise. A day/week/month or so taking it even slower than usual is never a bad thing for a woman in my condition!
Talking about the Steroid Baby reminds me of a story from mid-September when I spent a couple of days in the intensive therapy unit before going into the high dependency unit for a couple of days (see Turbulence and subsequent posts for the background to my admission). I don’t remember much about those few days nor most of the three or four days afterwards when I was on the regular neurological ward. Some of the snippets that I do remember came back to me in the following weeks but the majority of my returning memories from that week have been triggered by someone asking me if I remember doing this, that or the other.
Back to the Steroid Baby, I do remember being hungry beyond belief the day after I was admitted (and for several weeks afterwards). I was desperate for any food so I asked most of my visitors to beg, borrow or steal some food for me. My friend said something months later about the Subway sandwich that her husband had gone to get me and then I apparently had sent him straight back to get another one even before I’d finished the first!*
I said that I didn’t remember those specific Subway sandwiches, to which my friend’s husband quipped that he couldn’t either because I’d eaten them so quickly! I still have only vague memories of this incident. Perhaps I’ve blocked it out due to embarrassment!
Unrelated to the Steroid Baby but one of the things I remember clearly from those foggy days is waking up in ITU and asking the nurse where my husband and best friend were. I insisted to the nurse that they had been due to visit and I was expecting them soon. The nurse gently explained that it was after 2am and so they wouldn’t be able to come until later. I remember feeling angry at them for not showing up earlier. I didn’t know/remember at the time that my friend had been running around all day looking after the kids and Graham had been at my side for most of the day. I only told my friend about my unjustified annoyance a few weeks ago!
I put a photo on Facebook the other day of a couple of birthday cards that my brother had given to me. A friend had seen it and was tempted to respond with some tumour humour. She resisted as she knew that I would find it amusing but feared that other Facebook friends would be horrified. When she told me what she had wanted to say, I said it would have to go on my next blog post. Here it is:
“if Graeme can send you a card from wherever he is then why can’t he come and help with the decorating?”!
I fear that I no longer have any sense (if I ever did) of what is too dark for regular people so I mentioned it to my Mam this morning to gauge how tasteful it was. She laughed out loud so it’s passed the “Ma Rent Test” and that’s good enough for me.
The painting should be finished today but we have a couple of people on standby in case any more is required tomorrow and Friday. Thanks to everyone from near and far for helping us. Once again, we’ve been blown away by the generosity of those around us, some of whom I haven’t even met. Words can’t reflect the depth of our gratitude but trust me (I’m an honest lawyer!) when I say that we couldn’t have done it without you.
Next on the list are three carpets to be fitted; kitchen floor tiles to be tiled; choosing and fitting flooring for the kids’ bathroom; and, putting up the curtains and blinds that we’ve bought for the bedrooms and living room. After that, it’s down to furniture buying, moving and assembling and then we can complete the Big Move into a Little Bungalow.
PS This was one of the presents I got for my birthday:
*My go-to Subway sandwich used to be Italian BMT. At the recommendation of my neurologist, I’m now eating very little sugar and carbs, which rules out bread and thus somewhat limits my options at Subway!