I'm sitting up in bed, after a mixed day. I slept well, David and Nathaniel on either side of me again (Ben was in Melbourne for a conference, I'm afraid to sleep alone after having had the seizure), but sleep was also enhanced by having deliberately left my phone and iPad in the kitchen, so there was no opportunity to engage in my compulsive reading activities. Yes, I know, I'm blogging now, but it's therapeutic for me, and there's things I want to write. It will help me sleep…
I have 11 RT sessions to go - 5 next week, 5 the week after, and one the week after that. My last Full Blood Counts (taken on Monday) were fine, so maybe all the vitamins and herbal supplements I'm taking are making a difference. My dose of Epilum is nearly down to 500mg twice a day, & I'm on 500 of Keppra, and I'm feeling less sedated than when I was on 1000mg of Epilum twice a day. I just get very fatigued, and find it hard not to get cranky if overstimulated. It's so hard to try to stay calm with kids who are just being kids, testing your limits, pushing boundaries, when part of your is worried that you mightn't get to see them grow up, and you don't want them to remember your losing your temper with them, which you're more prone to do because your fuse is so much shorter.
Of course, no parents are perfect, and I'm not beating myself up about that, it would just be easier if my kids were perfect! I'm not making excuses for them, but they've had a difficult year - coming to Melbourne with me in January for my diagnostic tests, seeing me in hospital with tubes coming out of me after my mastectomy, seeing me go to emergency and have needles stuck in me 6 times during my breast cancer treatment, and being admitted 5 times, having me in hospital for Mother's Day and David's birthday, then getting the brain tumours and having to have two lots of surgery for that, having a seizure that saw me back in hospital, and now going through combined chemo and radiotherapy that has made my face puff up like a bull-frog. I'm surprised they're not acting worse than they are - poor things have every right to be anxious.
Establishing routines, chores, and clear boundaries/consequences seems to be helping with the boys, but sometimes, especially when I'm alone with them, it's easiest to let them play on electronic devices just so I can get a nap. Unfortunately, then we end up with hyper-stimulated kids who have a boss to fight or who don't want to finish at the allotted time because they have some quest to finish, and I'm the bad guy who let them play the devices in the first place, so it's all my fault that they're being difficult. At least they seem to be responding to my new strategy: I tell them that if they turn off before the allocated time (10 minutes away), then they can play again tomorrow. If not, then I'll hide the devices and they can't. It worked tonight.
From my side, part of me is coping okay, trying my hardest, part of me is scared. I realised today that I'm afraid of being alone in case I have another seizure. All those years of working with epilepsy patients at St Vs, and I never really got it. Having a seizure is really scary: I lost control of my body, I could feel it happening, and afterwards I couldn't recall everything, and all my neuropsych knowledge added layers of risk - people can choke on their own vomit during a seizure, or can die (Sudden unexplained death in Epilepsy phenomenon, or SUDEP).
That's unlikely to happen to me, I've only had one seizure, probably because I took a double dose of Valcyte the day before. But part of me is afraid that it might, and I'm worried that stress will lower my seizure threshold, despite the anticonvulsant medications - i.e., that if I get too stressed, or sleep-deprived, I'll be more likely to have another seizure, and seizures beget seizures. People often curtail their activities because of fear of seizures - though not being able to drive and my general fatigue stops me going out pretty effectively. I need to stop thinking about all the things I know, all the risks, and start doing things that can reduce the risks.
I have been confronting my fear of seizures by having at least two naps a day, one after breakfast, one in the afternoon, and sometimes one before lunch as well. I start the naps by doing a progressive relaxation exercise to a great app called calm.com - the sound of heavy, steady rainfall helps me to relax and fall asleep very quickly. If I don't nap for too long, it doesn't disturb my nocturnal sleep too much, but I can feel that it's getting late now and I need to take some paracetamol and get to sleep (it's now 10:14). My head aches all over, my face feels tight and puffy, and it will be nice to turn off my thoughts and succumb to sleep. I feel so much better when I do.
Tomorrow the boys will ride their bikes if the weather is fine, and I might get my remaining hair clipped off, though it's so soft and curly, it would nice to keep what remains. If my hair doesn't regrow over the radiotherapy site, I'll be bald for the rest of my life - I don't have the gumption to go with a weird half-bald hairdo, unless it grows in some beautiful sculptural shape. And then it would have to be very short, and I wouldn't like people to stare. I always liked Sinead O'Connor's bald look from 1990. Damn! another case of careful what you wish for… But hey, I also liked her gutsy song, Troy, from The Lion and the Cobra - particularly the chorus: "I will rise, I will return, the Phoenix from the flame." I will get through this. It will not destroy me. I will rise and live each moment as fully, calmly, and mindfully as I can, so I can be a good mother to my boys, and maybe a voice for people with brain conditions and their families. I'm starting to focus my energies now.
During my month of sleep deprivation after the brain tumour diagnosis, when the high dose of steroids prevented me from snatching more than 1-2 hours of sleep a night, I had the most amazing experiences where my body was asleep, but my mind was wide awake and felt more clear than it ever had in my life. I felt I could see across time, space, and all eternity, and gained a deep sense that life is beautiful, that we are created by a divine golden light of love that unites all of us, and that this love binds us together across time and space and all dimensions, and our existence doesn't end when our consciousness leaves our mortal bodies. Love, in short, is the most powerful force in the universe, is the source of all life and awareness, and It gave mefaith that I will get through this, that I will be able to do some good from this experience.
Of course, some people may think this is all hypomanic, euphoric, steroid-induced thinking, or that a month of sleep-deprivation on steroids was like taking recreational drugs. You're possibly right, but maybe we're both right, and my experiences are legitimate, and that I'll be able to do some good from them. It's certainly been a transforming experience, and the sense of being able to see love stretching across the universe as this beautiful, all-encompassing love, is something that fills my heart whenever I summon it to heal, cure, and protect me, and to protect everyone I love, and also every sentient being, so that all fear, hatred, and suffering might be gone.
Time to sleep.
I have been confronting my fear of seizures by having at least two naps a day, one after breakfast, one in the afternoon, and sometimes one before lunch as well. I start the naps by doing a progressive relaxation exercise to a great app called calm.com - the sound of heavy, steady rainfall helps me to relax and fall asleep very quickly. If I don't nap for too long, it doesn't disturb my nocturnal sleep too much, but I can feel that it's getting late now and I need to take some paracetamol and get to sleep (it's now 10:14). My head aches all over, my face feels tight and puffy, and it will be nice to turn off my thoughts and succumb to sleep. I feel so much better when I do.
Tomorrow the boys will ride their bikes if the weather is fine, and I might get my remaining hair clipped off, though it's so soft and curly, it would nice to keep what remains. If my hair doesn't regrow over the radiotherapy site, I'll be bald for the rest of my life - I don't have the gumption to go with a weird half-bald hairdo, unless it grows in some beautiful sculptural shape. And then it would have to be very short, and I wouldn't like people to stare. I always liked Sinead O'Connor's bald look from 1990. Damn! another case of careful what you wish for… But hey, I also liked her gutsy song, Troy, from The Lion and the Cobra - particularly the chorus: "I will rise, I will return, the Phoenix from the flame." I will get through this. It will not destroy me. I will rise and live each moment as fully, calmly, and mindfully as I can, so I can be a good mother to my boys, and maybe a voice for people with brain conditions and their families. I'm starting to focus my energies now.
During my month of sleep deprivation after the brain tumour diagnosis, when the high dose of steroids prevented me from snatching more than 1-2 hours of sleep a night, I had the most amazing experiences where my body was asleep, but my mind was wide awake and felt more clear than it ever had in my life. I felt I could see across time, space, and all eternity, and gained a deep sense that life is beautiful, that we are created by a divine golden light of love that unites all of us, and that this love binds us together across time and space and all dimensions, and our existence doesn't end when our consciousness leaves our mortal bodies. Love, in short, is the most powerful force in the universe, is the source of all life and awareness, and It gave mefaith that I will get through this, that I will be able to do some good from this experience.
Of course, some people may think this is all hypomanic, euphoric, steroid-induced thinking, or that a month of sleep-deprivation on steroids was like taking recreational drugs. You're possibly right, but maybe we're both right, and my experiences are legitimate, and that I'll be able to do some good from them. It's certainly been a transforming experience, and the sense of being able to see love stretching across the universe as this beautiful, all-encompassing love, is something that fills my heart whenever I summon it to heal, cure, and protect me, and to protect everyone I love, and also every sentient being, so that all fear, hatred, and suffering might be gone.
Time to sleep.
