Monday, 27 January 2014

Positive day

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!




Saturday, 25 January 2014

Challenging day

I'm having a very challenging day today with migraines and tinnitus but it seems to be improving well. I used to get anxious by this but I don't seem to have pressure on my head and no fever so just waiting it out, staying calm and taking paracetamol.

I've been in bed all day and it really hasn't been much fun but usually the day after a long rest I can relax and try to do things sensibly. Using my phone with the brightness all the way down is always a challenge! I've been so much worse than this so I can take it. 

On a positive note I'm very excited about having been asked to talk at The Brain Tumour Charity Grantholder Day in Farnborough. Being involved with much needed positive change helps to provide some hope for the future. I just wish more people knew about how serious this is because I only like to go out when I'm having a good day. I'm thankful that I am able to have good days at all because many people in my situation can't. 

Friday, 24 January 2014

An attempt at real positivity

Last year was extremely bizarre and always will be remembered for all the wrong reasons. I've decided to write a blog to keep people up to date with what has happened/will be happening with me regarding my brain cancer diagnosis and continuing treatment. I wanted to do this for a while as you can see from the date of the first post but I wasn't in a good place mentally. It got worse when my Mum was diagnosed with oesophogeal cancer towards the end of last year. Writing this now and reflecting on what happened is so surreal but it's nice to have an outlet for my emotions. I will occasionally become negative and say stupid things but I want to make a real effort to try my best to be positive.

This week I've had a few crazy moments mentally but I'm doing well with a few things I hope to share soon. Please remember that I'm still coping with side effects of radiotherapy, chemotherapy, and I have epilepsy related to brain trauma. My brain can't take too much at once and still needs lots of rest. It would be really good if people understand this when talking to me. Thank you. :)

Below is a nice picture of a brain for you because I'm sure that was boring to read...