Meningioma: Skillful means - getting support during critical illness

I just left the hospital after a visit with a dear friend. She has metastatic colorectal cancer and just had her liver resected (surgical removal of a part of the liver). What struck me most, about our visit, was her amazing spirit and her comment about how much she appreciated the support she’d received from friends and family.

Once more, I was reminded that the people in our lives can be a deep source of healing. Even though I know (on an intellectual level) that studies about the relationship between physical health and physical recovery show that emotional support is associated with better physical and psychological recovery outcomes and that emotional support reduces stress associated with the recovery from illness, there is nothing like being critically ill to bring the point home.

In my previous post in this series, I said that I learned how to interact with others, tell them about my illness and ask for support by watching a friend skillfully do these things for herself just a few weeks before my own diagnosis. Cynthia and I belong to a women’s sangha (a Buddhist group that supports each other). At a meeting in late July, she shared the news that masses were discovered on her ovaries two weeks prior and surgery was imminent. Hearing the news that someone I care about has just been diagnosed with a critical illness was devastating and frightening. What will I say that is adequate? What if I say the wrong thing? I’ve experienced times when I was so afraid of saying the wrong thing that I said nothing at all or tried to “act normal”. So my friend’s consideration of these things, from the beginning, was a great kindness. By gently and skillfully expressing her wishes for how she’d like to be supported during the days that would follow, she got the kind of support she needed and inadvertently taught me what to do when it was my turn to be faced with a critical illness.

First, Cynthia asked that we not share stories or medical information about ovarian cancer, good or bad. As a health care educator, she was very aware of the information that was out there. She said that for the moment she was fine. This did not mean she had not had “wobbly legs” from time to time, while she had been deciding what treatment path to take. She wanted us to support her with “just this”- i.e. not adding any of our own layers of reactions to this news on top of those she already carried… to let her have her own experience, to not try to fix it or take it away- just being present and being ourselves was enough. She let us know that she would not be informing members of her immediate family. Their proneness to excessive worry was too much for her. She wanted to wait until after the surgery when she knew what she was dealing with. She asked one of us to be with her at the hospital and to be the contact person through whom we could all get information about her status, need for visitors and so forth. This supported her but it also supported and connected her friends.

From my experience I know that a potential cancer diagnosis brings with it an incredible sense of powerlessness. Being able to determine some things for oneself, such as the type of support one wishes to have, is very empowering. Having asked for support we can take the next step into the unknown feeling a little less alone.

(Next: News Flash)

Put in your teeth

I know I promised you the “thank you but no thank you” post next but I was catching up on my newspaper reading and came across one of Leah Garchik’s columns featuring her annual Valentine’s “quote-by-quote tramp through the pastures of relationships”:

-- "If you're going to go out on a date, you really have to put in your teeth." (Woman's advice on dating among senior citizens, overheard at a women's gathering by Vivian Richardson)

-- "I will do hospitals, but I don't do funerals." (Two older gents discussing senior dating, overheard in the Berkeley YMCA hot tub by Jerry Fillingim)”

So for today, one of our most over-commercialized “holidays”, dreaded by couples and singles alike, I say laugh, eat chocolate, and by all means put your teeth in.

Meningioma: the care manager gets lessons on dealing with her own critical illness

I’m beginning this blog on the six-month anniversary of the removal of my meningioma brain tumor. As a Geriatric Care Manager in training, I see this blog as a place for commentary and sharing information about Gerontology. It is not my intention to have it be a saga about my one wild and precious life. But for now that is where I’ll begin. It is my hope that by grappling with my own medical condition, rather than swiftly sweeping it under the rug, I will have become better qualified to help others come to terms with their own illnesses.

When I was diagnosed with a brain tumor, I did not think to ask God for any special favors. I did not feel I’d done anything exceptional in my life to deserve special treatment and felt that my years of practicing Buddhism might have pushed me out of the arena of God's good graces. So there it begins. Who do we call upon when the illness that strikes is our own?

As a spiritual person I know that each of us has to reach into our deepest selves to answer this question. As a future care manger, I know that connecting people with their spiritual beliefs and community can be a tremendous source of comfort and support. I intend to address the role of spirituality in illness in more depth in the future. For the moment I will leave you on your own to ponder the issue of spirituality as it pertains to you and discuss some practical matters.

In answer to "who do we call upon", I’d like to say that most of us look to our friends and family. The definition of "family" that I like is part of the core concept of patient and family-centered care. “The word 'family' refers to two or more persons who are related in any way—biologically, legally, or emotionally. Patients and families define their families.” (Blaylock, 2001) From my own experience and those I work with, I know that having the presence and support of family makes a huge difference in the experience and outcome of surgery. Like many of you, I live in a city, far from the members of my natal family. For me, my family includes my husband, my mother-in-law, a few dear friends, and my cat, Wanfu, who doesn’t like to see me suffer.

At this point, I would like to tell you that my professional training taught me exactly what to do if I ever became ill. But I soon discovered that my training did not make me exempt from feeling shocked, afraid, and sad. I was as lost as anyone who had just received a medical diagnosis and faced extensive surgery and an uncertain future. In my case, I learned what to do by seeing my friend, Cynthia, prepare herself for surgery only a few weeks before mine. Like me, she discovered a tumor on a weekend with little or no advanced warning in terms of symptoms. It was sudden, and required some fairly rapid decisions to be made.

(Next: thank you but no thank you)