A view from the Inside

There’s barely a week that goes by that I don’t hear about someone fighting cancer in my circle of friends.     Right now, I have three close family members who have recently joined this club nobody wants to belong to. 

  

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/