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. 


  1. Hi Janet, what strength and courage I read there... Well done YOU! I admire the way you are managing all that you do they way you can... Hope too, that some time spent with a psychologist or counsellor may assist in the process of healing over these coming months and years. Much love Denyse

  2. hi Janet .. you are doing great! I can recommend a counsellor ... it gives you a chance to express all those hideously negative feelings that you cannot express to your loved ones. Just to be able to have a damn good cry was a true relief for me!!!

    I was wondering where exactly your meningioma was ... its not very clear on your multiple view MRI pic. I am guessing that it may be in a similar area to mine, i.e. petro-clivus? Your symptoms were/are the same.

    I had around 28 targeted radiation sessions in 2009. No radiation necrosis ... I think this is very rare with modern technology. Hope that this reassures you a bit.

    best wishes for your continuing recovery. xx

    1. Thanks Lesly, that is very reassuring. I know I need some counselling, I have been struggling a bit these past few weeks.

      My MM is in the cerebello-pontine angle, with some growth into the auditory canal. So close to yours. I haven't had any hearing loss but I do have tinnitus, and of course the balance issues.

      I hope you are doing well now.