Tuesday, March 20, 2012

Over the hump

Tomorrow will be 6 weeks since I had the radio-surgery. I feel like the worst of the radiation symptoms has passed. I no longer have that terrible fatigue or the nausea. I feel somewhat lighter. Last week I haven't desperately needed a daytime nap every day. Only on some days. I'm still tired though, and I'm still dizzy. It seems that I have two or three good days, and then a shocking bad day. Which is great; that is a big improvement. I actually think I am feeling slightly better than what I was before the radiation. And when I think back to last year, I know I am feeling better than in the months leading up to Christmas.

I think there are a few reasons why overall I am feeling better. Going to the gym has been a great thing for me. I've been able to increase my intensity during workouts, and my length of time. I have been forcing myself to go even when I don't feel well. There have only been a few days when I've felt too sick to go. But I try to force myself because I see it as a part of the rehabiliation process. I think that activity has helped to increase my stamina, and help my brain with the dizziness.  Knowing that we are past the diagnosis and treatment stage is also important. My focus now needs to be on rehabilitation and recovery. Tomorrow I am going to the balance and neurology clinic at UQ so hopefully they can help with some of the dizziness.

I know this is going to be a slow process. The radiation can take up to 2 years to work. There are a few stages I need to pass before I can really relax. Around 3 months the tumour starts to die (hopefully) and from 6-12 months after the radiation I am at risk of something called tumour necrosis where the dying tumour causes swelling and other nasty things to happen. I imagine that I will be symptom watching for a while, which in itself is exhausting.

This is probably the one thing I'm struggling with. How do I not let blobby run my life? How do I stop thinking about it? Yet how do I go on as normal when I have a tumour in my head? I am going to have to work out a way to just ignore him and get on with it. Nevertheless, it helps that now I can continue to focus on rehabilitation and look to the future. 

Sunday, March 11, 2012

Knowing my limitations

It is the end of another long week. Generally, it has been better than last week. I don't feel as sick. However I am fatigued. The fatigue is strange - it isn't like a tiredness. In fact I have a tiny bit of insomnia. However my body is tired. I feel this heaviness. Sitting still, I feel fine; but then I try to get up and my body doesn't want to move. I've needed to have a nap every day. If I don't, then I get really nauseous, and quite frankly I don't cope at all.

On Friday though, I felt great. Still fatigued, but a lot more energetic. I managed to play with the kids all afternoon which made me feel so happy. I can now see the light at the end of the tunnel. My symptoms have actually improved a little bit. I am still dizzy but nowhere near as much as usual. My plan now is to contact the balance and rehabilitation clinic at UQ and see if they can help me further.

Yesterday we had a lovely day out. We went to Redcliffe lagoon - a great big pool; playground; park area, all by the sea. We had a ball. Charlotte swam and swam and ran, and played, and picked up shells. It was great. However it was exhausting. Today I was shattered. For the first time in a few weeks I didn't feel up to going to the gym. Going back to bed was my best option. I get really upset at days like this. But I need to keep reminding myself that I am improving. I think I am over the worst of it. I just need to know my limitations and not push myself.

Friday, March 2, 2012

Just when it all seemed too hard..

This week has been tough. I haven't been as sick as that first week but it has still been hard. It is just over 3 weeks now since the treatment, and for the first time in years I can say that time is going so slow.

I started the week with terrible headaches. Of course, any sort of twinge I'm now paranoid about brain swelling. After a few days of chronic headaches I was feeling very stressed. With the headaches also came some nausea, and dizziness. And an intense fear that I would have a seizure. I don't know why I am suddenly paranoid about this; it's not like I've ever had one. Nevertheless, I asked James what he would do if I had one and his response - "Turn you on your side and put a peg on your tongue". Uh huh. Perhaps it's time we did a first aid course.

Wednesday I developed some blisters on the roof of my mouth and a burning sensation. I don't know if there were because of the radiation or not, but it did feel like a burn. It went away fairly quickly (I may have popped them) which was reassuring. And the next day brought more nausea.

Today was a bad day emotionally. We got some bad news from medicare in that our rebate has stalled - we should still get some money back but it was a bit demoralising. I don't often feel this way, but today I realised I have a brain tumour. And that isn't fair. And it sucks. And I'm sick.

Just when I felt like slipping into the doldrums, a couple of really lovely things happened. Mamamia (a site I frequently read and comment on) ran a competition to provide a use for Angelina Jolie's right leg. I put a comment, and received the most likes, and won! It was only something small, but I am so grateful to everyone who voted (even if some of them were a sympathy vote although go the Mummy power) but it has made me supremely happy.

And then this afternoon we got a lovely surprise. You may remember we had some portraits done with Katrina Christ Photography  last year which are devine. We picked the prints up around the time of my diagnosis and I had spoken to her about it. Today she spontaneously visited with a cd of ALL of the photos we had done during the shoot. It was such a lovely gesture, and I am touched beyond words.

After such a lovely end to a tough week, I need to pull myself out of these doldrums, and keep taking it one day at a time. Because tomorrow is a new day. I will still have a tumour, but I will be one day closer to beating him and living my life to it's fullest.