Lowering my expectations

It has been a busy few weeks filled with lots of things. Mum and Dad came down for a few days, James and I went to a dear friends wedding (and had a luxurious night out at a hotel in the city), James did his 100km (and a bit more) bike ride, the kids went back to swimming, just general life stuff.

And the last few weeks have been tough. Really tough. And then good for a few days, and then tough again. I have been doing an awful lot of thinking about where I am at now, and have realised that I need to lower my expectations. I tried going to the gym 4 days a week, and was shattered. We have gone out to social events and I feel fine there, until I come home and my brain shuts down and I need to sleep. I still can't hold a normal conversation with people - I ramble, it takes me longer to process what was said just a few seconds ago, I forget words, it is hard work.

I have realised that I am about 75-80% back to "normal" and that I am simply not improving. I have plateaued. However I don't know if I am ever going to get better. The trouble is I simply don't know what to expect. I did quite a bit of research leading up to my treatment, and about the dex and so on, but not what to expect 9 months later. I simply expected that I would be living life as normal. And I am far from that. So I have begun to look for people's stories and experiences and research (limited as it is) etc that can give me some guidance. What I have learnt is that everyone's brain tumour journey is different. Some people have surgery and bounce back straight away, others, like me, are still struggling months on. And I have finally learnt to shed the stigma I've attached to the word "benign" as my disease progress now is pretty similar to any other type of tumour (except I don't need chemo).

So I have lowered my expectations. I am still going to the gym 3 days a week which I am enjoying. After talking with James I have to accept that returning to work anytime soon just isn't going to happen. I am learning to like the dex. From what I have read, it appears that my type of tumour can swell on and off quite a bit so trying to manage that is going to be an ongoing thing. Today I increased my dosage again as I have had a terrible few days (I nearly went up to the hospital yesterday as something just felt wrong, I was as nauseous and dizzy as just before I was last admitted, but today I feel good). I have a lot to discuss with my neuro when I see him next about how we manage this. And I've accepted that I need help to work through these emotions so I have scheduled a session with a counsellor at the Cancer Council (they offer free sessions).

It has been quite an emotional few days coming to this point. I am still being optimistic, I know I am so much better than I was a few months ago. But hitting this plateau is very frustrating. It doesn't help that I am coming up to my next MRI (next week) and this is playing on my mind.

In the meantime, I am continuing to fill up our days with life stuff. Cleaning, baking, swimming lessons, birthday parties, kids getting sick, doing projects around the house, just life stuff.