Before my diagnosis I had little first-hand
experience with someone struggling with cancer and all the day to day issues of
chemo, radiation and hospital stays. As
a result, when I was talking to a friend with the disease I was more awkward
than a teenager asking a girl out on his first date (do kids still wait till they
are teenagers to date these days?).
What do you say to a friend or acquaintance who is battling a life-threatening
disease? Even speaking from the heart
everything seems so shallow. I can hear
sarcastic responses to everything I might say.
Things like “I’m sorry to hear your sick”. Duh…. not nearly as sorry as I am. Or “I’m here for you, what can I do to
help.” Help? sure…you can get me a
cure. “How are you feeling?” Just peachy
keen…want to switch places. The one I
love the most “Have you got a good doctor?”.
Nope…I googled for bad ones and picked the cheapest.
Yes, I know these are cynical responses
and most cancer patients would never think of verbally slapping a good-natured
person making an effort to offer comfort.
Being a patient often makes you more patient. But let’s face it, sometimes it is as hard
to be the person offering comfort as it is to be one accepting it.
Having just spent another 9 days in the hospital,
I thought I would offer up an insider’s view of what it is like to be the
patient and maybe in some small way it will help the next time you are faced
with the awkward situation of finding the right words. Considering the source, no promises it will
help.
Offers to help:
It’s wonderful when someone offers to
help but unfortunately, but then you feel obligated to take them up on it. It doesn’t take long before your freezer is
full of meals that given the sensitivity of your stomach will likely still be
there 6 months from now. I have this
nightmare of playing casserole roulette where you end up regifting food to
other patients who in turn re-gift until some unsuspecting person actually eats
it (or worst, it comes back to you…kind of like that rum cake last Christmas). After the freezer is full you start to make
up things that people can do for you just so they don’t feel bad. Could you fluff my pillow, help me with my
slippers, I’m dying for a chocolate shake (I know…poor choice of words). For
me, if there isn’t anything pressing and immediate, I have started saying
“right now I’m all set but I appreciate the offer and if something comes up
I’ll let you know”. In the interim,
taking the time to come and see me (call me, email, write) is gift enough. Which leads me to….
Boredom
There’s two aspects of boredom, one is
having too much time with yourself, and the other is having too few interesting
things you can do. Many cancer
patients are either trapped in hospital rooms or isolated in their houses for
extended periods of time. Unless you
are the type of person that Carly Simon was singing about (for you youngsters,
look up…” your so vain”) there are only so many books you can read or movies
you can watch (with no one to discuss them with), or games of solitaire (or
video games) you can play before your brain turns to mush. It can get pretty bad. One day I found myself rearranging the sock
draw, twice. I planned to do Pam’s but
one look from her told me any attempt and cancer would be the least of my
worries. Everyone has a breaking point
and mine is watching daytime TV. Before
I succumb to that I would move to a state that supports euthanasia. What really helps is company. Friends and family reaching out to touch base,
patiently listening to you complain about the latest test, wound or sickness,
exchanging stories about books, movies or current events (other than Trump) or
just telling you about their lives (as mundane as they may be, everything sounds
exciting to a cancer prisoner). It
doesn’t have to be a visit or even a phone call, if you are afraid to say the
wrong thing, just send a note or an email (or chocolate…lots of chocolate…the high-end
stuff).
Change in perspective
I know it sounds trite but there’s so
many wonderful things we take for granted in our day to day activities and we
don’t recognize them till their gone. Suddenly
you are missing things you didn’t realize you enjoyed (like the nuances of your
sense of taste) but you have time to enjoy things you didn’t know you were
missing (like a brilliant sunrise or watching birds make their nests). Here’s just a short list:
I miss:
-
A morning
run
-
Some fruits
and veggies (but not onions, cabbage or brussels sprouts)
-
Summer
Concerts (can’t be in crowds)
-
Traveling
(planes are a no-no)
-
Parties and
movie theaters (the crowd thing again)
-
A cold beer
in a bar with a friend…or even a warm beer.
Heck, doesn’t even have to be a friend.
-
Hugs (more
germs avoidance)
-
A week
without needles (or even a few days)
I’ve discovered the joy of:
-
Reading a
whole book in one sitting
-
Smoothies
(mouth sores made me a smoothie fan)
-
Naps
(notice the plural)
-
Long
conversations with friends about nothing at all (instead of text and emails)
-
Walks with
the dog at sunrise
-
Binge watching
TV shows (haven’t gotten to Game of Thrones yet)
-
Cooking
(really more like food experimentation…amazing what you can burn and still eat
with limited taste buds)
When you take something away something
new takes its place. I sometimes find
wonder in the simplest of things that in my past life I would have found altogether
trivial. It can frequently garners
me strange looks but then again that isn’t anything new to me. I just smile, it makes people think I’ve
lost my mind. They treat you better
after that.
Being forgotten
I have a great support group of family
and friends. They are very attentive, at
times maybe to the point of feeling smothered.
I love it. Despite the
attention, being in treatment, and in the hospital, makes you feel very alone
and detached from the rest of the world.
While everyone else’s life moves on (kids, concerts, work, parties,
friendships….) time has stopped for you.
You are stuck in an artificial bubble world of doctors, medicines,
tests, hospital visits, procedures, bills and insurance. One
of the biggest fears, particularly with pediatric cancer patients, is being
forgotten by their friends, classmates and teammates. For me it’s being isolated from my
grandchildren. They are my biggest joy.
Range of emotions
When I talk to people they often want to
know why I’m not angry (or sad, or scared, or frustrated or …pick your favorite
expected emotion). The truth is I’m
all of the above at different times but most of the time I’m pretty
upbeat. Don’t ask me why, it might be
left over endorphins from all those long runs (or it could just be early onset
senility). I’m certainly not happy
about facing a disease with a 50/50 chance of survival but I also recognize I’m
doing all the things I can to keep the odds in my favor and the rest is out of
my control (big fan of the serenity prayer).
My new favorite saying from the movie Whiskey, Tango Foxtrot…”Embrace
the suck and move the #*ck on”.
We all have our dark times. The middle of the nights are the worst. Alone in the dark with my thoughts can be a
scary place (it can make a trip down the rabbit hole with Alice look sane). It’s when the mind won’t shut down and all
the fears, aches and pains get magnified.
Sometimes I walk, sometimes I just pray for the sunrise, but most of the
time you let it wash over you knowing at some point it will pass. It breaks my heart knowing that there are
thousands of children out there going through the same nightmare.
People may wonder if they should talk to
me or send me info about treatments or survival rates for fear it will upset
me. I say bring it on! There is nothing you can say that I haven’t
already thought about and talking about treatments, cures and outcomes helps me
to verbalize my emotions. It’s a hell
of a lot better to share than to stew alone and those conversations tend to
bring you closer to people at a time when you are feeling so alone. I should caveat that this is me, not all
people will feel this way. Some people
may want to be oblivious to the risks and challenges, using the “if I don’t
know then it’s not real“ model. Denial
can work too.
In the end, I’ll be more upset that I
didn’t take advantage of all the time I do have than I would about having less
time. Making the most of time is a
good lesson that is so hard to practice when you are young and so real once you
are older. A lesson that is still not
too late for me to work on.
But these are just my ravings. If you would like to get some first-hand
insight you can visit the website of PCFLV (one of the organizations Help in
the Nick of Time works with) and the read stories of pediatric cancer
heroes. In Sept. they do a story a day
on the fighters…uplifting and heart rending.
http://pcflv.org/
