I keep getting reminders that every day can be very different. Spending the weekend resting and doing very little helped to settle my head and I feel much less tired today. Everyone who has any kind of brain trauma quickly becomes aware that how you sleep, how you eat, stress, every day makes such a difference to how you cope with symptoms.
Sometimes I get very down on my bad days but when I realise where I’ve come from I get very encouraged by where I am now. When I have a good day I’m tempted to do too much but sometimes I feel like its worth it. It can take at least a year to recover from some of the side effects of radiotherapy on its own, let alone everything else! If you have radiotherapy to the brain you are aging brain cells so in the long term things get worse and this is a controversial topic but hopefully the benefits really do outweigh the risks if the person gets to this stage.
After radiotherapy I was incredibly exhausted, especially since I was never on steroids (this is a good thing but very tiring!) Physically my first goal was to take a few steps down my hallway at home and now I can walk very confidently despite being quite dizzy and tired. Most people can’t see this but I’ve kind of gotten used to it unless it becomes too much. It feels kind of like being hungover all the time! Today I did light exercise in the gym and I’m getting more confident in this environment even though there is a lot going on around me. I go to a class which was set up for young people who have had stroke and I’m very thankful for someone who I now regard as a really good friend from it. Having people around me who understand helps hugely because other people just go at too fast a pace now. I’m very good at hiding how I feel on my good days but then I get exhausted just by the effort to seem normal!
Today I managed 10 minutes on the exercise bike and 2 minutes (I felt too dizzy) on the rowing machine but I feel fortunate. This sounds like nothing to most but to me it’s huge. Even though I can’t run or do any weight bearing exercise yet I feel very fortunate to be able to do what I can. I’m also happy that my hair is growing back now from the radiotherapy. Small things make big differences and sadly there are other people with malignant brain tumours who are doing a lot worse than I am and who have permanent neurological deficits. This might not be the most light hearted blog to read and I’m being very serious but I hope people can learn from it. Even though the future is uncertain I’m lucky to be here and I’m lucky to be feeling more like myself. I have decided to have 2 more cycles of chemotherapy before stopping my treatment. It’s difficult having to make these big decisions myself but I think it’s the right one.
I thought I’d share a few pictures of my story to show how far I’ve come so far.
My tumour- PXA with anaplastic features (grade 3), diagnosed for treatment as Anaplastic Astrocytoma (grade 3). The top left picture is from the most recent scan, bottom left is before surgery.
Before the gym today and seeing my hair starting to come through now slowly but surely. I still think I look very sleepy!