
Cancer Talk Voices of Hope and Endurance from The Group Room, the World's Largest Cancer Support Group
Selma R. Schimmel with Barry Fox, Ph.D. Published by Broadway Books, a division of Random House
The following information is taken from the pages of Cancer Talk, Voices of Hope and Endurance from "The Group Room", the World's Largest Cancer Support Group, by Selma R. Schimmel.
BRANDON: "I
was twenty-eight when I was diagnosed with cancer. IT was like somebody threw
a wall in front of me. Everything just stopped; work, my whole life. I had my
life goals set, but suddenly I didn't know what I was going to do. I was stuck.
And I had a wife and a baby. What was going to happen to them?"
PATTY: "I
was twenty-seven when I was diagnosed with breast cancer. It was scary, and no
one I knew had any idea what I was going through. You can't just call up somebody
and say "Gee, I'm feeling rotten because I had chemo today." They have no idea
what you're talking about. I went to a concert when I still had the drainage under
my arm from my lumpectomy. I thought I was the only person in the world that had
cancer. With thousands and thousands of people around me, I felt absolutely alone."
REGGIE:
"I was working in construction, making good money. My wife was working in
banking. I was in the middle of remodeling my home, as well as quite a few other
people's homes. All of a sudden I couldn't work and the money stopped. Bam! Luckily,
I didn't have to move in with my parents. We were pretty fortunate that I had
health and disability insurance, plus my wife's income. But it was hard. We're
still paying off bills from my bone marrow transplant and other cancer treatments.
It's hard."
KYLE: "I always have it in the back of
my mind. My doctor told me that he wanted to follow me all the way through college,
through my marriage, and later. It's like it's never going to leave me. It scares
me. I had some bloody noses recently, so we want to get tests to make sure that
everything's still OK. Is it ever going to end?"
HALINA (therapist): "Young people usually
don't know anyone else their age who is going through the same experience as they
are. And cancer really interrupts and disrupts life at the very moment when the
young person is beginning to consolidate an identity as an adult. He or she may
be just finding a place in society, in a relationship, in a career. It's a different
experience than it is for those who are winding down, who have already had careers
and raised families, who have had opportunities to actualize some of their dreams
and have a life. A life-threatening illness is out of place in young adult lives
because it comes at an age when they should be making plans for the future. Young
people don't tend to think about mortality, and don't start thinking about it
until much, much later in life. And since it's still relatively rare for young
people to face death, there is much less of a community of peers to connect with,
to identify with. Somebody in their fifties, sixties, or seventies, on the other
hand, wouldn't have as much difficulty seeking out other people their age who
have cancer."
JEREMY: "You have to take control
of yourself, even though you really can't comprehend this "thing" that's been
thrown at you. You have to find out what you need to learn about your cancer,
then say "Hey, I'm going to go get some help." That's what you have to do."
HALINA (therapist): "One of the strengths
of young people dealing with cancer is that they are often action-oriented, goal-oriented,
energetic. They often want to deal with the disease, right now!"
BARRY: "I feel as if I'm disappointing
my parents if something is not going right of I'm having problems. They've always
been there whenever I had a problem, they've always been there to help me, and
see me through it. But I'm an adult now; I should be able to take care of it myself."
BRAD: "I had quite a few friends when I
got sick, but ended up with only two. The others disappeared."
LORI: "When I was diagnosed with a brain
tumor last year I turned to my friends for support, like I always do. Most were
great, but one said she couldn't be a part of it and that she could only be around
for the good times. I was stunned when she said that-we were such good friend!
Later she apologized, and I realized that she said it when she was scared and
ignorant."
DESIREE: "I had a lot of support in the
beginning, then a lot of it faded away. I think that when a friend gets cancer,
people reflect on death and their own mortality. For people my age, in their twenties,
that's a really hard subject. Most of my peers have not experienced the death
of a friend or family member; my cancer shoved death right into their faces. So
some friends disappeared. But others I never would have expected to come through
were there all the time."
LAUREN: "Dating is a real concern for me.
I can't have children because of my cancer. When do I break the news to a date,
especially if I really like a guy? I haven't met anyone, but I think that when
I do date, not being able to have children is going to be an issue."
TANYA: "I wouldn't want to talk about
my cancer experience on a first date. I'd rather get to know the other person
better before I open up to such a vulnerable part of my life. Being single, I
can tell you that cancer is a good relationship barometer. It helps week out some
of the guys you don't want to be involved with."
DR. MICHAEL (medical oncologist): "I'm
so happy to hear that you had what it took to get another opinion when the doctor
said you had to lose the child. Most of the time, today, cancer treatments can
be applied during pregnancy. What's remarkable is that once you get into the second
and third trimester, you can actually undergo chemotherapy."
MIA: "When I learned I had cancer, I felt
my body had betrayed me. It changed the way I saw the world. But then, to be able
to give birth to my second son three years later was the most positive thing I
could have done. It helped me focus on the future. It helped me regain some comfort
with my body to know that something so good could come out of it. I think about
recurrence less and less. Although I know it's a possibility. Instead, I focus
on my children, in the present and in the future."
URI: "I'm eighteen years old. It was really
weird but I went, shall we say, to make my deposit at the sperm bank. Even though
it was a clinical experience, it also felt like an affirmation of life, a way
of saying that there will be a future."
MARC: "When I was diagnosed with testicular
cancer at nineteen, my urologist didn't tell me I could store away sperm. After
all the chemo I received, wee, there was nothing there anymore and I realized
I'd never be able to father a child. I still feel angry that my doctor never told
me about banking sperm to protect my future fertility. He told me afterward that
he didn't tell me because he thought I was too expensive for me, that he didn't
think I would be thinking about children at age nineteen. I'm now twenty-nine
and engaged to be married, but I'm dealing with feelings of loss and regret."
LIZA (diagnosed age nineteen): "I
had a bone marrow transplant three and a half years ago, when I was nineteen.
I had no idea that I wouldn't be able to have children, that I would come out
looking like a man, and that I would go through menopause and twenty-one. It's
been difficult, but I have learned a lot. I've learned that every day is so important.
I've also learned that it's important to do things for others, even simple things
like opening a door for somebody. When I was at my sickest, I got treated the
worst. Before I got sick, everybody would open doors for me, I was treated well
at school, I was really catered to. But when I was down and out and people couldn't
tell if I was a man or a woman, they just looked at me. I always wore pink or
flowers, hoping that would tip them off. I could hardly even open a door, it was
so difficult, but they never helped. And now I realize those little things can
be so important."
ADAM (diagnosed age thirty-two: "Because
I've faced my own mortality so early, I'm armed with something different than
I had before. I appreciate things more deeply. I cut to the chase, rather than
fooling around with things that I'm not that interested in. And I've lost a certain
sense of fear. Once you face this, what else could you possibly be afraid of?"
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