Wednesday, September 5, 2007

Turns of Conversation Help to Navigate the Fear and Boredom

At the chemo clinic, there are several seating areas. There is a fairly large, main area with 6 or 7 plastic/metal reclining seats and regular padded chairs with arms on them dispursed in between. There is an additional row of 4 regular armed chairs in this room also. The main nurses station is in that room as well. Then, off to the side, there is a hallway with a bunch more of the chairs with arms lined up for people getting blood draws and as additional waiting for chemo. Off this hallway, there are a couple of small treatment rooms with 3 of the reclining chairs and 3 regular chairs each. There is also a "nourishment room" where patients can get juice, crackers and water. (There is a microwave in there in case people bring something more substantial and want it heated up.) There is another seating area that is somewhere between the small and large one in size.

I like to sit in the larger area. It is less intimate, but I get to talk to more people there. (Me, talk, NO WAY!! I'm quiet as a mouse and never talk to strangers!! It must really be Deb who likes to talk nope, nope, not me no way no how, never, not a peep...) Usually, in this larger space, there is some lively conversation going on. The small rooms are good too, but you aren't always assured good conversation because of the limited space for varied personalities to fit. I bring a book to read during the 4-5 hour infusion, but with the cocktail of meds on board, sometimes it is hard for me to concentrate on written words. Also, my vision weirds out from my blood sugar elevating due to the steroids. So actually, when reading is just too difficult, conversation helps to pass the time. It's really not just an excuse to hear myself talk. Sitting and staring or meditating is good for a while, but not as an all day activity.

The conversations are always interesting and I really love to hear other people's stories of their lives and their own experiences with cancer. I'm not the type of person to seek out one of those cancer support groups, but sometimes hearing someone else's story and helping each other find solutions to common problems like nausea, fear management, transportation issues, and bad veins helps to put one's own situation into perspective. Each time I meet someone new or hear someone's story for the first time, my gratitude is renewed for the miracle of them finding my cancer early, having an incredible support system, having good insurance and a car, being able to rant in my journal, with those I love and on this blog.

Today, our conversation ranged from interesting tomato varieties to dogs to inoperable cancers, chemo effects, disappearing spots in the lung and internal radiation. I was able to help a woman deal with the fears related to the unknown in regards to the internal radiation that she was due to start this afternoon. All I did for her was to describe step by step and feeling by feeling what I experienced yesterday in order to demystify the experience for her. She has a different radiation doc than me, but it sounds like my experience of not being told ahead of time what to expect is not out of the ordinary.

What I don't understand is why doctors seem to think that ignorance of a procedure is the best way to proceed with patients. I don't understand how they are so totally clueless about their patients' basic human need to know what to expect in order to better deal wtih the situation. Now, I'm not talking about necessarily telling them in gory detail every little thing that can go wrong at every step of the way. (Quite the contrary, an average experience description would be very helpful in order to allay fears.) I'm talking about taking an extra 5 minutes to explain the basic procedure, then attentively listening and encouraging their questions. Not everyone has a partner like Deb who knows exactly what questions to ask when and in medical terms which she later does an awesome job of translating into English for me. And, not everyone obsesses over their questions the way I do, usually keeping the majority of them in the forefront of mybrain simply because of obsessive neurotic fears. Most people need a minute to process information in order to know the correct questions to ask. Too often, Doctors are busy looking at their watches or anticipating what they think your questions and fears are instead of listening to what they REALLY ARE. Instead of empowering their patients with the knowledge that they need and want, they desempower them by feeding them what they THINK their patients want to hear.

Hope walks a precarious line between seeking knowledge and being fed clean, pat answers. It is up to the patient and the doctor to find that line together.

24 comments:

  1. What an experience, I agree with you about the more you know about how a procedure will happen the better things will go because you won't be so tense and nervous.

    I admire your courage to be so open about how all this is working. Has it helped that you are working on becoming a minister?

    ReplyDelete
  2. Hi Aimee,

    Just popped in to say hi and wish you the best. I log on to your blog just about every day to see if you have posted. I,like Pam,really like your writing style. I am still thinking and praying for you.

    jacqui

    ReplyDelete
  3. Hi, Thanks for creating a blog. Never used one before, but it beats youor Deb having to respond to e-mails.Also, if nonew info is there, I don't have to disturb you with questions.What a journey. I hope youpublish what is on the blog.Cornelia

    ReplyDelete
  4. I think that because I am aware that part of ministerial trainig is to take a long, honest look at yourself and to try to make a committment to living your life as close to your moral and spiritual ideals as is possible, that does help me to stay compassionate with myself throughout this whole process. I believe that I should practice compassion if at all possible, and the hard part is allowing that for myself as well. Learning to allow other people to be so supportive and allowing them to know what is on my mind is very hard, but it is part of my quest for honesty and compassion with others and myself.

    Writing this blog helps me with the rigorous honesty and the allowing of support when that is a very hard thing for me to do. I'm finding a whole new unexpected miracle through this process. I never thought I could let people see so much of myself. I also never thought I could get over being embarassed or feeling unworthy of the outpouring of love and support that I am experiencing through this.

    Going through this whole cancer experience has also allowed me to see some more things in myself that I thought I was pretty good at, but that I really need to work on, like being more attuned to those I love and to those others who also are going through difficulties. Sometimes, getting caught up in my own story, I lose sight of other people's struggles and stories. That also affects my ability and even my will to stay focused on my calling as a healer. Through being wrapped up in my own stuff, I haven't been doing as much meditation and sending out as much healing energy as I do under "normal" circumstances. During those times that I do make a concious effort, it seems to help myself and those around me. It's just hard to get out of my head and into my heart sometimes.

    I am continuing to work on all that, with the help of those who love me. I will try to keep working on these things even if my plans of going to seminary don't come to fruition, because I feel that in making myself a better person, I am helping to make the world better as well.

    Thanks for reading and being such a strong part of this support system that has built up around me.

    Shalom,
    Aimee

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