HAP Posted May 17, 2014 Report Share Posted May 17, 2014 Dear friends, At last I know why no matter how tired I feel I have difficulty dragging myself to bed at night. It is not just that I am sleeping alone. I woke up five times last night and remembered what woke me up all five times: the same dream. In it, Jane is still alive, but in her final months/weeks. We have not gone into the hospital yet but we know what she has and are searching for a cure--or rather I am. She is too weak to get out of bed without help. I'm looking for black raspberry powder--which does help, sometimes, with the diarrhea carcinoid/NETs causes--acacia leaves for a tea of some kind--which has no bearing in reality that I know of, and a couple of other things that are increasingly desperate--ground apricot pit equivalents as far as I know. Ultimately, I fail. Ultimately, I watch her die again and again and again. I suspect this has been going on for months/years. The good news is last night I finally had worked through enough of the trauma to finally remember the dream. Maybe now I can get a grip on those issues and deal with them. And maybe that is part of why I have been so miserable over the last week or so. I started crying in the car on the way back from Chelmsford and the Cystic Fibrosis walk. I've been tearing up with some frequency for several days now. Part of it is the frustration I'm going through with both Relay and the Marathon Walk, I suspect. Part of it is the awful and ongoing sense of isolation--even in groups of people I like. Part of it is working with patients in the support groups and realizing for all the progress we've made, very little of it is reaching the patients--that from the description of some of their symptoms that some of them do not have very long--that they and their doctors are simply managing the end of their lives as gracefully as can be done with this disease. For all the effort we have all put in, the death rate is not declining. We've just gotten marginally better at detecting the disease. Oh, we have some things in the pipeline, but before we can get them into the mainstream, a hideous number of people are going to die the same death Jane did. CAPTEM, a two drug combination that looks really promising in the early trials appears to be a standard treatment in England. But because it uses two generic drugs, getting the FDA trials done here that would lead to its eventual approval are going at a glacial pace: not enough profit in it. And of course its use in England means nothing here. But the major component of my angst is missing Jane--and, looking at those dreams, how much it hurts that I could not do more for her at the time. Not that there was anything I really could have done much differently--there was even less of a cure available here at the time--and even globally we had virtually no understanding of the disease and how it worked. But my subconscious clearly has not yet let that one go either. Thanks for letting me verbalize this stuff. I don't feel much better but I may find sleeping marginally easier to attempt tonight. Peace, Harry Link to comment Share on other sites More sharing options...
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!Register a new account
Already have an account? Sign in here.Sign In Now