Blindsided: Navigating a Post-Cancer Life

It’s been two and a half years since my husband was diagnosed with stage III colorectal cancer.  After a year of aggressive treatment that included weeks of daily radiation, months of often debilitating chemo, and major surgery, a routine follow-up scan deemed him cancer free.  You would think there would have been boundless rejoicing, a new lease on life.  But two and a half years later, we are still dealing with the fallout.

It’s true that we rejoiced at his post-cancer treatment clean bill of health.  And in hindsight, it appears that we even went into a post-cancer euphoria for a time.   For me personally, the spouse who watched her husband face down death, everything good about our life together suddenly seemed more vivid, and I was filled with a gratitude I could hardly find the words to describe.  I know now that it was a sort of honeymoon period following the hell – the absolute hell – of cancer treatment.  And honeymoons are notoriously short-lived.

Towards the end of last year, things began to unravel.  A young woman on a cancer support message board my husband frequented died very suddenly and unexpectedly from complications of the same cancer my husband had.  This coincided with his upcoming annual scan – this would be the first scan he would undergo after a year of no cancer treatment.  These two events served to stir him up into such a frenzy of agitation and anxiety that he could barely function.  His scan showed “no evidence of disease” – the best news we could ask for.  And still the anxiety didn’t abate.  I began to think he was suffering from some form of PTSD – a delayed reaction to all the trauma he went through, physically and emotionally, during The Year of Cancer.

Since then, our life has been like riding a roller coaster, to borrow an old cliché.  There have been just enough good times to keep us hopeful that things will return to “normal,” but some really low lows, and an almost constant pall of sadness and anxiety cast over our life together.  There have been health setbacks for my husband – the cancer is gone, but the cancer treatment itself left him with complications we weren’t prepared for – complications which have landed him in the hospital more than once, and close to death again.  There have been some horrible moments when everything has culminated in destructive rages, and our whole family is left trembling, in tears, frightened, angry, and terribly afraid that this is just how it is from here on out – goodbye happiness, goodbye dreams, goodbye safety and stability.  It’s as if my husband – my kids’ father – didn’t really survive cancer – it managed to steal the best parts of him and of our life together.

Although I’m not a doctor, I still believe that my husband has been dealing with some form of PTSD.  It’s also dawned on both of us of late that he is dealing with depression.   Depression that is chronic at this point, and insidious.

We’ve been completely blindsided by all of this.  People don’t talk about this – about what happens after you get through cancer treatment.  Everyone on the outside just heaves a huge sigh of relief for you – thank god you got through that!  And I think everyone just kind of hopes and assumes that life then goes on for you, pretty much back to normal, but hopefully even better.  What you tend to see and read about people who face down cancer is that they either (a) die from it, or (b) survive it and then become very vocal cancer awareness advocates, participating in marches and walks, doing 5- and 10Ks to bask in their good health.  I wonder, though, how many of those cancer survivors, in the privacy of their own homes, have crying jags, or sleepless nights, or bad tempers, or anxiety attacks.  I wonder how many of them secretly feel like outsiders, like cancer changed them for good and they’ll never get their “old self” back again.  I wonder how many of them are grieving for their old life, for their innocence that disappeared with a cancer diagnosis.  I wonder how many of them find their previously stable, dependable marriages in crisis.  I wonder how many of them privately swallow a dose of Prozac or Lexapro or Ativan every morning, or spend time crying and talking it out in a therapist’s office.

I’m betting more than people realize.  Way more.

I think there is a stigma surrounding the mental health of cancer survivors that goes beyond the garden-variety stigma surrounding mental health in general.  I think for outsiders, there is an expectation that cancer survivors live up to some ideal to show the world how to make the most of life after such an ordeal.  We look up to cancer survivors – they are heroes and role models to us ordinary folks.  Look at Lance Armstrong!  Live Strong.  Don’t let anything get you down – not even cancer.  And for the cancer survivor himself, there is the perhaps self-imposed pressure to just be grateful.  And to have some great answer to the mystery of life’s meaning.  So we don’t talk about the depression and anxiety and in some cases, the PTSD that wreaks havoc on families, following a pronouncement of “cancer free.”

But the truth is, cancer survivors have been through something akin to war on the front lines.  Active combat.  Through cancer treatment, they have been subjected to systemic, long-term poisoning.  They have been made to face the indignities of a weakening and diminishing body, a changing appearance, and often, physical disfigurement.  They often have parts of their bodies removed, forever changing the functionality of their bodies.  They are forced to rely on the help of others.  For some, their medical issues create financial hardship.  And through this all, they are faced constantly with the threat of death, and all that might entail: pain, suffering, leaving children unraised, bills unpaid, loved ones bereft, and a life unlived.  How can anyone come out of this with his or her psyche unscathed?

More than raising cancer awareness, I would like to raise awareness about the mental health of cancer survivors.  It’s not all roses and sunshine and 5K runs after cancer.  The aftermath of cancer can be a longer, more painful journey than cancer treatment itself.  I remember being mired in the darkness and difficulty of the year my husband was going through cancer treatment – myself suffering from depression at the time – having a hard time seeing a light at the end of the tunnel, thinking this was the hardest thing we could ever face.  I lived, during that year, with an almost palpable wish for the year to just be over so we could have our life back.  I look back on that time now and think, “That was the easy part.”

There is a lot of hand-holding going on during cancer treatment: doctors and professionals always present, taking care of the patient, implementing a plan of action, constantly looking after the patient’s wellbeing.  When cancer treatment ends, even with the best of results – a clean bill of health – it’s a sudden free-fall.  You’re on your own now.  Find your way back.  Assimilate back into the land of the living.  Make the most of it.  But how to do this if nobody talks about it, if nobody acknowledges how goddamn hard it is?

That’s why I’m talking about it now.  I believe that in sharing our experiences as human beings, we help each other, by asking to be heard, and by touching someone else who needs to be heard.

, , ,

3 Comments on “Blindsided: Navigating a Post-Cancer Life”

  1. Jennifer Varanini Sanchez
    August 22, 2011 at 4:30 am #

    I love your blog Lisa. Don’t ever stop writing. We need your voice heard in the world. This is SUCH an important topic. I believe you have hit the nail on the head with this one. Thank you for always being honest and open and sharing.

  2. mumofone
    August 22, 2011 at 4:59 am #

    There is so much I could say – but some of it I will separately PM you – suffice to say that I wish there was more awareness about this as I absolutely agree with every single thing you’ve said above. One interesting thing…I never refer to myself as a “cancer survivor” – I’m not sure why but I hate this expression. One of my favourite quotes comes from a lady who died in her twenties from cancer:
    “JESSICA DISTELDORF: I don’t use the words beat or fight; this isn’t a fight against cancer because the implication there is that you can lose. I’ve always referred to this as a journey through cancer, it’s a journey it’s not a fight. Chances are I’m going to take an earlier branch off the river than everyone else but I’m not going to lose the journey.”
    My own perspective has been the same. I have been on a journey….I have not been in a fight or a battle. Because the immediate initial “fight” has long since passed for me after 8 years almost to the day since my diagnosis. But my journey of living with having had Stage 2 Colorectal Cancer is something that has had to be incorporated into my life’s journey and while some of the fear and negative emotion does fade with time, you are right that things are never quite as they were before.
    Thankyou for beautifully expressing your thoughts. If I had chosen to share with people my own diagnosis I would definitely share this with people. But in fact there are are only about 10 people on this planet who know I had cancer in my early 30’s – in large part because of the stigma and ignorance attached to such a diagnosis.

  3. Maggie
    August 22, 2011 at 12:33 pm #

    PTSD is a definite possibility. A fair number of folks have PTSD symptoms after relatively routine surgeries. Under our wonderful modern self-aware “conscious self” is a “younger” self, much more in touch with the body. Sometimes after surgery that “younger” self is stuck in the operating room, looking at all the gleaming instruments, yelling, “You’re going to cut WHAT?” and having a very typical 3-year-old kid’s reaction to that idea. Helping the ‘conscious’ self to talk through this is only part of it. Sometimes we need to let the inner, younger self have a voice, too.

    I so appreciate your bringing this issue forward.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: