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 Main Support > Patient-to-Patient Support > Being a Caregiver

    Karl, this may be a little late in terms of helping you respond to the person who wanted help with how to be supportive to her recently-diagnosed friend, but perhaps you could send it to her anyway.

    When I was first diagnosed 2 years ago, I got off the phone with my doctor and called 1-800-4-CANCER to get info, then got on the computer.  Like Daisy, the first article I read said that lymphoma was probably "incurable," and that doctors recommended clinical trials.  This seemed to me the worst possible news, as my mother was diagnosed with ovarian cancer at Stage 3, and participated in 3 clinical trials before she died a little over a year later.

    I was ready to pick out cemetery plots, and refused to buy new clothes cause I'd probably die soon. (I had to go to a conference the day after diagnosis to give a paper, hadn't slept, and packed nothing appropriate). My husband, on the other hand, remained insanely optimistic.  He insisted I buy clothes I didn't need and would probably have talked me out of before.  Every step through the diagnosis he cheered about the "Half full" glass.  "Yuck, lymphoma -- but it's indolent, lazy and slow growing, hoorah!  Bone marrow involvement, so Stage 4?  But it was only a little bit, and the doc said that it would probably be there.  You don't have B symptoms, hoorah!"  I kept looking at him like he was nuts. He went golfing as usual with his golf league the day of my bone marrow test, and I clung to that normal behavior -- "he's golfing, therefore I must not be dying today."  It also helped that he hugged me a lot, reassured me of his love and that he'd be there with me through everything.   

   Around that time we stumbled into renting the movie, "Galaxy Quest," which then became our favorite movie.  The team of astronauts in the film chanted, "Never give up, never surrender," and we used that with each other a lot (they probably thought we were nuts when we chanted it in the oncologist's office during my bone marrow test, but we didn't care). Besides my husband's incredible optimism, based on a lived philosophy that each of us really only has NOW, (though an optimist, he's long said "we're all just hanging by a thread"), he found me the Kwak news release from the NIH about the vaccines.  It was only two pages long, but it said that people who were previously in bad shape had a complete remission, and were still alive.  I read that article and carried it with me as my Bible.  Anytime I found something negative, my husband countered with a positive article about the relative nature of statistics, how lymphoma was like managing diabetes, etc.  This is not to say that he tried to talk me out of my angry/depressed moods, because he didn't.  He'd listen, and then gently try to offer an alternative view. 

   It also helped that a day after my diagnosis, a close friend told me that I'd beat this because "You can go from zero to bitch in 10 sec. flat."  (Being ornery and optimistic are my trademarks.)  Gradually, after a few months, I re-entered the stratosphere of earth and started living again. (My analogy for what happens after diagnosis is that all of sudden, we lose our gravity field, and float out to outer space.  Eventually, we realize that we're tethered to all of our roles and relationships, and pull ourselves back to our lives, though never in the same way.)

    Sadly, I learned immediately with my diagnosis that I had to keep away from my very closest friend because her alternating pattern of denial ("Cancer is the best thing that can happen to you, you'll be grateful for it someday") and abject depression was too much for me in the early months.  Again, my wise spouse kept gently helping me to see that we all were learning to live with my diagnosis, and that everyone responded differently.

    Speaking of responding differently, my teenage kids were horrible.  I kept wondering if they wanted me to die sooner rather than later, because they were unbelievably nasty.  It took a while for me to figure out that their father's solicitous behavior towards me made them think I was lying when I said I wasn't going to die soon, at least as far as I could tell.  Once my daughter expressed something to that effect, my husband and I realized that she was right, and we worked at getting back to normal.  When we did that, the kids were fine.  They still refuse to talk about my cancer or ask questions, but I always tell them when my appointments are and the general outcomes.  They studiously pretend not to be listening, but it's apparent that they are and are relieved. 

    So, the long and short of my advice is that you need to just be there as an optimistic harbinger of good news and support.  Take cues from your friend, and listen but don't go down the darkest roads with him/her. Gently work to get them back in the tunnel that has light at the end.  Perhaps most importantly, treat your friend the same way you always did.  I could tell if someone gave me the "you have cancer" look, and my husband and one friend never did, so I talked to them the most.  Indulge your friend, too. For ex., I found that I had a low tolerance for whining from others about their "petty" problems, and told my friend (the one of zero to 'bitch' quote above) that I'd mentally trump their problems with my diagnosis.  If she was around when someone started whining about something dumb, she'd look at me and say, "trump?" with a smile.  I'd usually concur, with a laugh. 

    Trust me, there are no goodies in this lymphoma basket, but you can try to be playful and bold in suggesting coping strategies.  If your friend's a "she" and needs chemo soon, go with her to a 'hip' hairdresser (talk to them first so your friend doesn't have to deal with a weird reaction) and look at short hair styles and fantasize about fun stuff to do with it when the hair grows back (when/if my time comes, I'm going from brunette to bleached blond, with streaks of color throughout.) Before she's hair-challenged, you can help her find tatoos with outrageous messages to put on her head, as well as cool hats with colored braids attached that you can order from the "Coping" magazines. Show your love in all of its forms is the crux of my advice . . . and God bless you for being there.

Dx 6/00, Stage 4a indolent nhl, w & w

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