Managing fatigue, irritability, medications, mood. Easier said than done.

822pm and I'm exhausted. Sitting up in bed in a darkened room, Ben reading with the boys in their room next door. I really should be turning off the laptop and going to sleep, but I want to process what happened today. It hasn't been one of my best.

It started with David coming to my bed at 4, waking me again at 5, just as I was going back to sleep, and then again at 6 after I'd taken refuge in his bed. I don't cope well with being woken repeatedly when just on the cusp of sleep, and his sullen prepubertal demands didn't elicit the best mothering behaviour from me. I.e., there was a lot of yelling on both sides, and I've told him that if he wakes me before 7am ever again, he will not get to check on his games on my iPhone or iPad for the whole day. He sees that as a big injustice, which makes me want to destroy both devices. (Breathe, Fiona)

I'm half-way through my combined RT/CT treatments - 17 down, 17 to go. The hair on top of my head is growing back thick, black and curly (completely unlike before), but the area over my right ear has lost all of its hair, reavealing a thin pink scar and very smooth skin. There are sensitive spots on top of my head and at the back as well where the radiation is entering my scalp. I watched the machine move around me today during my treatment, and realised that radiation is passing through many areas of my brain in order to target the regions that surrounded the tumours. I asked the radiation technicians about that, if it would damage my brain, and they said that healthy cells repair themselves very quickly, whereas tumour cells find it harder to repair radiation damage. I hope my new mantra of "Cure, heal, protect" and visualising the golden loving light of creation during my treatment is helping add something to the treatments, along with all the medications and supplements that I'm taking. Add to that a good brain-reserve capacity, and I hope I won't come out of this with too much cognitive decline.

I had to make myself a drug chart on the weekend, like they use for patients in hospital, otherwise it was too damned hard to make sure I took them right. For example, it seems that my seizure might have been triggered by me taking a double dose of Valcyte the day before - my neurologist says Valcyte can lower the seizure threshold. I managed to sit down last Friday night and create an excel spreadsheet that lists my medications, (prescription and supplements) for the next month. It allows me to see the weaning dose of dexamethasone recommended by my neurosurgeon (I'm now down from 4mg 3 times a day(tds) to 2 mg tds), the increasing dose of Keppra and the decreasing dose of Epilum (sodium valproate). I'm still feeling sedated and muddle-headed at times, and find excess noise, sunlight, or demands from others very difficult to deal with. I need to keep the sunscreen blinds down in our house in the morning, as the light is too bright, and the children's tv, or even the inaninty of Channel 7's Sunrise, is incredibly irritating. Being asked questions while I'm trying to sort out my medications is very hard to tolerate - I need to be able to focus on one thing at a time, and I feel awful for snapping at the kids, but I wish they'd just listen to me and leave me alone until I've done what I need to. I know they're only kids, so I try to remove myself from the situation if they're driving me bananas, but then Ben tries to "help" by telling them I'm going to lose my temper - makes me feel great, though I know he's trying to help.

He was stroppy with me last night for asking, yet again, about the details of when I had a seizure. I was trying to establish how long the seizure lasted, how long I was unconscious, and how long it took for the ambulance to arrive. I know he said it lasted about 2 minutes, I was then unconscious, turned a bit blue, and that the ambos gave me some diazepam. I understand his frustration that I've been asking the same questions about the seizure repeatedly, then I realised that I wasn't asking the right question, which was how long did it take for the ambos to arrive - for some reason, it was very important for me to know. Unfortunately, he didn't know. It was important to me, perhaps, from years of taking histories about acquired brain injuries, and wanting to establish the duration of post-traumatic amnesia, by determining the duration between the last memory (for me, Ben calling the ambulance and telling David to run next door), and the first memory after (the ambo being beside me). Probably not important or relevant in the scheme of things, as I didn't have an ABI, but it's very scary to have had a seizure after having watched them on video EEG recordings for many years, to have seen them first-hand, and to know that having had a seizure and having a visual field defect means that I might never drive again. At least I've had 30 years of safe and happy driving behind me, and I'll still make a good teacher to my kids.

Last night, I had a look at a magazine and info pack that came from the Brain Tumour Alliance Australia. It had some helpful parts, but was a bloody dismal and depressing production, that would depress anyone without the ability to read widely and search for stories of hope. Far too many uses of the words "terminal", "palliative", and other  phrases that suggest that all brain tumours are going to kill everyone. The outcomes aren't great for everyone, but if you take away hope from patients and their families at the time of diagnosis, you're going to skew the outcomes towards the negative simply because it's harder for depressed people to take control of their health. There are so many things we can do to improve our diet and lifestyle and fight cancer that way, even when we feel dopey and sedated, and with as much muscle-tone as a rag-doll, as I have today. Or last night, when I had a self-pity attack of feeling sick and tired of feeling sick and tired. I had a good long cry, generated some tryptophan through my tears, and reminded myself that things could be far worse, and that we're heading into spring, a time of new growth and new life. I have great faith and hope that we will get through this, and that I will be able to fulfil my lifelong desire to help people with brain disorders and their families.

I've long ago accepted that life is a terminal illness, that we're all going to die from the moment that we're born, and that we can't know when our time will be up. Some people will live long and healthy lives, some will be snatched away prematurely, without rhyme or reason. So the important thing is to live the best life you can every day that you can. We can never know when we might be called away. It doesn't stop me from sometimes feeling bitterly resentful at media portrayals of young and healthy people who seem to have no perception or experience of suffering, but I know that's all smoke and mirrors, too. The BTAA newsletter talked about resentfulness being a common reaction, so it's nice to know I'm normal, in at least one way. Everyone has their own crosses to bear, at some stage in their lives, and we all have to deal with them as best we can..

Given all the positivity I can generate at times, I found it ironic that I was able to get cross with my mother today when she came to visit, even though I was lying on the couch, feeling exhausted, having napped for about 20 minutes. She was complaining that she'd had to buy a water filter because she doesn't like the chlorine and flouride added to the water supply of her small town at the pressure of the "medical minority" who have been concerned about the levels of e.coli in the water for years. She said it didn't bother her (she never drinks cold water from the tap, always has boiled water, but it's disturbing to see the mud in the water after a decent fall of rain), and I said it wasn't just about her, that there was science behind it, and that e.coli wasn't good for people. She went on about me supporting the "medical minority" and I said it was based on science, and could she please desist from spouting such uninformed, unscientific claptrap near me when I wasn't feeling well. She took offence at that, so I tried to explain that I don't need to get worked up about things at present, and that this was one thing that was working me up, so could she please stop, but she took offence anyway. I apologised for being tetchy - I'm sorry Mum. It's just really hard for me to be calm and patient all the time now, especially when I'm tired or feeling overwhelmed, or too many people are telling me to do too many things. I need to focus on just one thing at a time, and get into the zen of doing it (stacking the dishwasher is so wonderful, as is unpacking the cutlery).

I feel so blessed that I know what I do about brain injuries, it helps me to understand what is happening,  and helps me to appreciate how lucky I am that my tumours grew where they did. If they'd been reversed, I'd have comprehension difficulties and greater visual problems, as well as problems with my right hand. It still doesn't make it easier to manage the fatigue and irritability, or to educate my family - I know I need to rest, but it's hard to do so, and no matter how much I explain to Ben and the kids that I need to be given space and quiet, it's still hard for them to stop the long-term habits of asking me for help, or telling me what I need to do. I'd prefer to be asked what others can do to help me, to give me a sense of control in this. Losing a sense of control is one of the hardest things. To-do lists are great ways to regain a sense of control, or structure at least.

I had an interesting realisation the other day, but don't think I've shared here yet (my memory is a little unreliable now, I blame it on fatigue): Ever since I was a little girl, I was fiercely indpendent, and tried to do everything I could for myself. My mother encouraged it ("God helps those who help themselves". "Your legs are younger than mine") and lots of praise for helping around the house. I was apparently a child who just wanted to make everyone else happy. But in always doing things for other people, I wasn't that good in doing things for myself, in saying no to others, or in accepting help from other people. The last two months have made me aware of how important it is to be able to accept help from others, to accept their love and support, because in maintaining a fierce attitude of independence, I was closing my heart to love from others, and reducing the amount of love I could give in return. It was a way of protecting myself from potential pain, and fooling myself into thinking I was helping others - maybe I was, but without fully putting my heart into it. My heart feels open and safe now, and that's a lovely thing.