Wednesday, July 22, 2009

Some update.

July  22.  Things are changing.  Here is a little note I wrote concerning  my current status

I try to stay busy every day and continue to enjoy pain free days (almost pain free).  There is a slow but detectable decrease in the ability for my stomach to assimilate food without painful consequences.  However, since I have to tube feedi at night  I am not concerned.   I continue to try to eat even with the unpleasant consequences since this way I am adding some calories.  I still weight over 162, down from 170 when I came home from the hospital.  They had been tube feeding me 24 hours a day for several days before I left. I was amazed at the weight I gained.  A lot of it may have been fluids.

A group of atheists have been coming to visit (twice now and one  scheduled for Friday) for discussion.  The sessions start around 7 and last until it looks as if I have had it.  Very enjoyable evenings.  Ann Andrews from the UU church have visited three times and we might work up a weekly schedule and I already have a weekly meetings with Margret Jones, the hospice Chaplin.  So you can see that at the moment  my time is being well occupied.

I am still not at the full level of acceptance (serenity) concerning   my future  loss of independence and the slow death that this type of cancer generates.  Thank god for hospice.

Got to go Bob


  1. Glad to hear from you, Bob. And I'm also glad that you have some folks to talk with in person. I wonder if "serenity" is the only state you might think about -- acceptance is one that's in reach, perhaps. Your friends seem like good folks to talk with about that.


  2. Hi Bob,

    I have no idea if "acceptance" in the way we conceive of it can even be part of this equation. When I read your words, the reality of your situation is almost too painful yet I know so well this is my "situation" as well, with or without a diagnosis. Thank "god" we can live in conscious denial each day, though the veil between life and death is so very fine.

    Much love and best to you and your family.

  3. My brother has estranged himself from the entire family for 20 years, and I have desperately tried to get him to reconnect with him, but he always rejected me so I left him alone for a long time, moved to another city for 4 years, then moved back. When I came back I tried to find him, not to bother him, but just to see him at his place of business from afar without going in.

    We grew up as both friends and siblings, so this is very harsh for me to deal with. But we had a difficult childhood as a result of having an untreated psychotic mother. Finally yesterday, I was able to find him. He is only 48 and in hospice for terminal cancer and a thoracic aneurysm as I understand it. I so missed him all those years. I just want to be able to be with him during the short time he has left, but he is still living in that dark childhood.

    As a small child, he was bright and wonderful, and his siblings loved him dearly. As an adult, he became distant and morose and turned into a complete loner. He is angry and always seems to feel the pain of our childhood as if he were 12. That is still true today apparently.

    I was able to find him only because a woman at his work and the assistant manager told me he had decided to look for me. (I had left a telephone number with a clerk at his work and just gave him the option for him to call me, but apparently that person lost the phone number.)

    The real disappointment was that last night when the nurses allowed me to see him, he wasn't really sure he wanted to see me, although he did apologize, saying that all of this was not my fault and that I just had the bad luck of being born into the same family. I gave him a hug and said said that I just was happy to see him and that we are not living in that world anymore. The nurses only allowed me to see him because he had been looking for me on the Internet with them.

    Unfortunately he started saying he was upset that they had let me in and that this was not what he wanted. He was angry at a nurse for letting me in and told her she had no right. (That nurse was not the one who let me in and had no responsibility for the situation. I told him that.)

    He was heavily sedated on morphine. (He wears a morphine pump now.) But he was clear enough to talk to me, but wasn't sure which of the sisters I was. I was able to at least get someone on his visitor list as next of kin and to discuss it with the nurses.

    Since then he has had an "episode" at the hospital, where he snatched his IV out of his arm. He seems angry they said. They suggested that I not come today and that I call the social worker tomorrow to see what the situation is.

    This is extremely disturbing to me and sudden for me to deal with also. I won't go see him of course, because I don't want to disturb him, but I know he wants to resolve this, and it may never will be resolved in his mind.

    He does still love me, but he is just living in this alternate world, where he has lived for too long a time, even before he became ill. People at the hospice said he has expressed that he doesn't want to die alone and that he said he wanted to see me, I suppose I'm rambling.

    Is there anything I can do to give him peace for the short time remaining in his life? Is the only answer to leave him alone?

  4. Being there is the best gift you can give him.

  5. work through one of the chaplains, or a social worker to ease your presence