... in my brain actually. My very own brain tumour

Friday, April 18, 2008

Visit to the neurosurgeon

This morning I visited the neurosurgeon for my first post operative consultation. As previously mentioned, he is aware that I want to be kept fully in the picture without anything being held back or glossed over. I need information about my condition in order to help manage it and give myself the best chance. He obliged with kindness, honesty and empathy. The rest of the day I have felt rather flat. Not depressed or fearful, but emotional and tearful. I suppose what he told me caused a lot of truths to re-surface and put me back in touch with the reality of my position.

Firstly, he told me that I am looking in good physical shape. I agree. Apart from some patchy hair loss, I look fine superficially. I told him that I am desperately tired permanently and that I have rather serious weakness in my legs mainly. This he confirmed, is normal, and is caused largely by the treatment. It will improve with time, but probably not to my original level of fitness as a mountain climber.

He reminded me that I have a "terrible" tumour in my brain. That is not nice to hear, but if that is the case I need to know. The radiotherapy and chemotherapy regime I have been receiving is a relatively new approach to this kind of tumour, having been administered at the same time rather than serially. That is fine. I am being guided by highly skilled professionals, and follow their advice. But, as I have kept saying, it has knocked the hell out of me.

He asked about my intellectual functioning and I told him that it has regressed. I think slowly and often become confused and emotional. I feel that I make poor decisions as a result. Again, he emphasised that the radiation and chemotherapy are extremely serious forms of treatment and that they have multiple effects not only on the tumour, but also on a wide range of other brain structures and other systemic parts of the body. The problem is that without treatment the prognosis for this type of tumour becomes very bad and can be reduced by many months. So, I believe that I have made the right decision by going ahead. Lots of aspects of my life are fine. I can enjoy music, eating (!) friends, the sun on my skin, the sound of birds in the morning. A little walk every now and then is nice - perhaps round the block at home or even around the Rondebosch Common if I am feeling really good. I am not saying these things to make anyone sorry for me. These are joys and I want to enjoy them.

He told me thatI am probably at my worst now. The Oncologist also said this recently. Any improvement will take a long time - perhaps up to about 6 to 9 months. He kept emphasising how seriously the treatment hs affected everything. At this point there is no real point in having another scan to look at the tumour. It has probably not changed in size yet. A further scan may be called for in about 6 months time. Any further treatment with chemotherapy (and that is a definite possibility) will be at much higher doses and may have the effect of holding the size of the tumour where it is, but will be unlikely to shrink it. Hmmm. It does seem to be a nasty thing. I will remain positive and not give up though. I have a part to play too. The things that I need and want to do to smoothly transfer my knowledge of the program sold to SEDA will be done by me very responsibly but at all times with my health in mind. They understand that fully anyway. I am an impatient person in this kind of matter, but I will try my best to relax and just do the very best I can without (literally) killing myself in the process.

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