Today is one year to the day that I had my MRI. One year ago today my whole life changed. When I think back to that day when I had my scan, and the days that followed it, it is all such a blur. However once I had the actual diagnosis I remember feeling just a sense of calm. I was sure that I would have surgery by Christmas. That I would be fully recovered after 6 months with maybe some small deficits. Boy was I wrong!
So how are things one year on? Physically, it has taken quite a toll. I still get so fatigued, the dizziness is always present, and the nausea is awful (although I am taking a new anti-nausea drug which is helping). My brain gets so tired that I find it hard to read and think. I have nerve damage in my face (to my trigeminal nerve). My hand shakes when I get too tired. I've put on weight. My hair is thinner where the radiation was. I'm still on 2mg of dexmethasone, and now I'm taking antacids, calcium, and vit D tablets to counteract the effect it is having on my body. But...blobby has not grown in a year. The swelling in my brain from the radiation is decreasing.
When I think back to where I was before the diagnosis I am worse off, but not really by that much (and in different ways). I can't actually believe how long I struggled through, taking care of the kids, and running around being a Mum. Because I was dizzy, nauseous, and oh so fatigued then, I just didn't know why. I have some vivid memories of coming home from Mother's group in tears because it was so exhausting; I felt like a failure that all the other Mum's could cope and I couldn't. At least now I have a reason, although I feel immense guilt that I am not the mother I wanted to be.
Emotionally I am still struggling with my sense of guilt. I have guilt about everything - my need to have a nap, my lack of housework, the fact that I have to be sick at all (and the impact it's had on our family). And also with that a bit of anger. Not really a "why me" type anger, I don't see the point in that. For whatever reason I got dealt this diagnosis, so I just have to live it. But I get angry at how much money we have had to spend on treatment, and daycare, and medical bills. And then I get angry at thinking about all the things we are missing out on (like holidays, and shiny electronic gadgets, and nice couches that don't smell of pee and vomit).
So what else has happened in a year? The kids have grown up. Angus has turned from a little baby into a toddler. Just today he used the word "me" to refer to himself. He is a delight to watch. Charlotte too has changed - she is hardly a toddler now and is entering the world of "little girls". Just recently she has become obsessed with princesses, and jewellery, and has become aware of clothes. It is a remarkable change to watch. Of course they are both doing things like asserting their independence, and we have some interesting (challenging, infuriating) behaviours, but I love them so much. Both are doing well at daycare (they are still in two days per week). Both are growing, and healthy, and thriving. So maybe I am doing something right.
I do love this time of year though. Because we now have the chance to look forward to what is to come. And that is exciting. Soon it will be Christmas, and then Charlotte's birthday, and then the New Year. Obviously I need to keep getting stronger. But I am still hopeful I can return to work next year (yes I know, I need to pace myself on that one). Charlotte will officially start kindy (she has been in the kindy room at daycare for quite a while and is loving it). Angus has quite a few big changes to come (toilet training, eeek, a big boy bed). James will be doing a bit of travelling for work with conferences and so on. We are planning a nice tropical holiday. Life goes on. Unfortunately blobby will be along for the ride so we had better start getting along a bit better!
Tonight we are going to have a lovely bottle of champagne and have a toast: To surviving one whole year with a brain tumour, and may there be many more to come. Happy tumerversary to me!
