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Hello Friends overseas,
Seeing a posting by Hope about life on Decadron, the waiting game I call it, reminded me to say hello and share the love and the pain. For some time now I have not felt able to identify with most BC contributors here, and where I live in the UK. My recent experiences living with a metastatic brain tumor in the posterior fossa (inoperable) made me want to seek out others who are familiar with this kind of waiting. I started to feel that the quality of life being maintained in me by the Dexamethasone was so demoralizing that I would look harder for an alternative. I found a Palliative Care Consultant who agreed to see me. It was another door to walk through. He said that from his experience the benefit of the Dex had long since worn off; that literally it probably had done nothing positive for me since the very early weeks after diagnosis - mid January 2005. He suggested I could wean off it so with nothing to lose, thought I, I started the next day. The day after that the pain was so debilitating but I persevered. WHY? To find my pain threshold??? I don't know except that I did try to hide the intensity of it from my husband who has a huge fear of me being in pain. I can't say that I expected it to be that painful. I hadn't thought it through. Truthfully, if I had taken enough analgesic to deal with it I would have been a complete zombie, ie not a quality of life improvement. Finally I gave myself permission to stop torturing myself and as soon as I took the Dex the pain stopped. I can only conclude that it was still working and had, I guess, been working during these last six months. Initially I was given an estimate of 6 mos before it was felt that the cerebral oedema would be out of control and cause my death. So I am back now in a 'stable' place where I get weaker by the day. It was primarily the unpredictability that had been driving me crazy. I never knew what kind of day it would be until about an hour after I took the meds. Today I can accept that much better because I know I cannot handle the only alternative I know, stopping the Dex. Now each day there are new but small signs of increasing disability BUT nothing major. And this is what I am waiting for now? Just a gradual progression towards more complications. I have had a very easy ride so far compared to almost everyone I read about. But I am not special or different in any significant way so there seems to be nothing more useful to do but live each day that I am well to the fullest, buying a new pair of trousers every week to accommodate the increasing girth. No trousers, no go out at all. I would very much like to hear from others like Hope who have brain secondaries ONLY. I am NED in all other respects.
All the best to all of you who are still having treatment and to those who are beyond treatment.
Love and respect, Eccles
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