Tag Archives: Home

15 Myths About Our Journey with Childhood Cancer

When my son was diagnosed with a high risk cancer, I learned so much about life and the twists and turns it can take.  I also learned that many of the things I thought were true, or would be true, were very simply not.  The following are fifteen assumptions I found to be false on our incredible journey.

Myth #1.  Life With Cancer Sucks.

Sometimes it did.  Of course it did.  But the majority of time it did not.  You have to remember, our cancer journey was over the course of five plus years.  And three and half of those were active chemotherapy.  There was no way I was accepting “a life that sucked” for three and half years let alone five to seven.  With or without cancer.  So no.  Life didn’t suck.  Life was full of wonderfully rich adjectives, and with a gratitude that was palpable.  And remember, everything is relative.  You better believe life is sucking more for the family who was diagnosed (or unable to be diagnosed) in a third world country; or a country without health coverage; or circumstances where the child has no support.  Life was still life.  It was ours.  And no one was going to tell us it sucked.

Myth #2.  Knowledge is Always Power.

When your child is first diagnosed with a life threatening disease you become like a blank slate thirsting for every piece of information you can garner about their diagnosis.  But then after a little while you step back and you start sifting through all of that. You ask yourself, what really matters?  Do I need to know everything about everything?  Do I need to know every possible thing that “could” happen, or is it better for me to have a strong foundation about what “is” happening?  And what sources do I trust?  Where am I getting my information from?  Sometimes knowledge isn’t always more power … it’s just more knowledge … and not always reliable knowledge at that.

Myth #3.  Tomorrow Will be Better.

Nope.  Tomorrow might be worse.  Tomorrow might be the day that never gets better.  I’m very much an optimist, but I was always planted firmly in reality as well.  There are no guarantees.  Tomorrow ‘may’ be better or it ‘may’ be the worst day of my life.  I guess it’s that little “will” I couldn’t get over.  There are no absolutes.  But there is today.

Myth #4.  You Have to Have Hope.

Again.  Nope.  I would rather have no hope than the illusion of hope.  I would rather have an educated true understanding of what we are facing than have a false hope.  Again, it’s that “have” to have.

Myth #5.  Blood is Thicker than Water.

I am so lucky to have some mighty thick blood in my family.  My Mom and Dad proved how to walk the talk during so much of this experience.  Which trust me is a difficult thing to do over the marathon that is childhood cancer.  Their support was immeasurable.  Aunts and relatives who came to the hospital and sent cards and gifts lifted my spirits so much, even though outwardly I may have looked exhausted. We were so blessed.   But make no mistake, I also learned the viscosity of water can, in a few particular amazing people, be just as thick or thicker than blood.  And I discovered that the whole ‘blood versus water’ thing mattered not.  Blood or water has little to do with the people who decide to step up, and in turn for the people who just don’t. It has little to do with blood.  And everything to do with the people who choose consciously to walk beside you in the world no matter what.

Myth #6.  Sharing in Others’ Experiences will Lighten Your Load.

This one reminds me a little bit of the child birthing experience where sometimes, in some cases, some mothers feel the need to share every horror story there is … in a very unsolicited way.   And boy, in the cancer world it really depends where your mind and heart are in your journey with whether you can take in all those stories of other children’s side effects and experiences.   Many times these side effects were rare, but significantly life changing.  I found it often burdened me down with worries that may never occur, rather than lighten anything for me.  So I became selective in what conversations I engaged in and with whom.  That sounds awful doesn’t it?  But I needed to take care of me, and my load was heavy enough.

Myth #7.  Numbers are Everything … when it Comes to Survival Rates and Prognosis.

False.  False.  False!  FALSE!  This a myth I debunked early on.  I had to, as Mark was diagnosed in the high risk category of cancers.  I found I had to, in order to live the life I needed to for the kids, for our family, and for myself.  The reality is … our experience is … you can beat the odds.  And getting weighed down in survival rats and prognosis when the numbers are firmly against you achieves nothing, and can significantly harm the time you have – which we all know is only ever “now”.

Myth #8.  Numbers Mean Nothing … when it Comes to Blood Work.

I know I just said numbers being everything is false.  But when framing it in the context of bloodwork, they ARE in fact everything.  I lived and died by those CBCs.  They told me so much.  How he was doing, what tomorrow may look like, whether we could hope for a jaunt to the playroom, a walk in the park, or the brass ring of going home.  And when we did get home those numbers mattered because they affected our daily life, and therefore what memories and moments we were able to experience.  Would the day entail an afternoon transfusion of platelets, or instead a trip to Hennigars?  We made our fun no matter which it was … but those Hennigar days were precious, and the numbers helped us get there.

Myth #9.  Crisis Brings Out the Best in People.

It doesn’t always.  And you have to learn what to do with that at every turn and at every experience. There will be the people who don’t come to the hospital because it’s too difficult for them.  For them. For THEM.  Sigh. There were others who just seemingly dropped off the face of the earth because they didn’t know what to say.  I had to learn to forgive all these people, to see things from their point of view, or to let them go from my life. I have chosen all three at times.

Myth #10.  Facts are Clear Absolutes.

There are very few absolutes in the childhood cancer world.  Facts must be communicated and they must then be received.  This must happen in an environment that is both unequal and unfathomable, to both the oncologist and the family.  The frame with which this is done, which health professional is telling you, and where you are as the parent emotionally, all significantly affects how you interpret a so called fact.  Trust me.

Myth #11.  It’s All Part of a Larger Plan.

Ummm … Hi.  There is no plan.  There is a big difference between believing in a larger plan and a higher power.  And if by some small measure of truth there is a larger plan, trust me, you don’t want to hear about it.  The ending isn’t always good. Even for children.   So no.   My plan didn’t focus on anything larger. It focused on getting through the day, whispering thank you for the day, being present in the day, making the day incredible.  For Mark.  For Megan.  For me.  For us.  It was about the day.  It was about the here and now.  It was no larger than that.  And it didn’t need to be.  At least not for us.

Myth #12.  The World Stops.

Guess what.  It doesn’t.  I remember my first time leaving the hospital after diagnosis.  I had no understanding how everyone could just be living their life.  It was then I learned you think it stops; but it doesn’t.  And sure, it may stop for you.  For a few moments.  But even then it keeps on turning pretty damn soon after those words are uttered.  Because those bills keep coming, the animals still need to be fed, and work eventually needs someone back all too soon.

Myth #13.  It Takes a Village.

Sure a village is nice, but I found not required.  I didn’t really have a village.  I had just moved, and at that was in between homes.  As in physical houses.  The village I had nurtured was hundreds of miles away in a different Province.  The majority of this journey we did on our own.  There were no freezers full of casseroles or no neighbours popping by.  There were no friends offering to help with Megan.  We knew no neighbours and we had no friends here yet.  And that’s not a ‘woe is me’ thing. That was just the way it was.  We literally were in the middle of a move to a brand new place.   So yes.  A village would have been nice.  I know it would be different now having established relationships here.  But we still managed pretty ok without it.

Myth #14.  Home is Where the Heart Is.

I’m afraid sometimes home is home, and it has nothing to do with the heart.  Sometimes it’s brick and mortar and your very own bed.  I know there were many nights in the hospital I felt this way as I lay on a cot next to his bed.  And I know I felt this the night that Mark lost his first tufts of hair as we were  lying on a mattress on the dining room floor of my parents house.  We were waiting for our new home to be built and while we were in the hospital had to move out of our rental that was our temporary home.  On that night when I saw his hair on the pillow as he lay beside me, home wasn’t where the heart was.  That night I wanted nothing more than to be in my own bed in my own home …not some transient, homeless gypsy, sleeping on the floor waiting for drywall to be erected in Avonport.

Myth #15.  The Oncology Floor at a Children’s Hospital is a Horrible Place To Be.

People have this pre conceived notion of what an oncology wing at a children’s hospital is.  I know I did.  They have visions of bald little children with tubes coming out of them, being poked and prodded, waiting to die. I guess parts of that sentence are true.  But the reality of the floor is so very far from that notion.   We laughed and played and lived a lot of life there.  We met our strongest allies and our fiercest champions.   We built relationships second to none.  We saw the definition of resilience.  You see, it couldn’t possibly be a horrible place to be, because lives are being lived so fully there each and every day.  They are being valued and treasured.  And they are being appreciated … at least I know they were by one family … because after all, it was there where I first started whispering thank you.

“My Last Best Place”

It’s snowing. Again.

I live in the Maritimes, most specifically Nova Scotia, and more specific than that in the beautiful Annapolis Valley, on the Bluff.

It’s February 19th today … smack dab in the middle of winter … so the fact that it’s snowing shouldn’t come as any great revelation.

The thing is, is that it’s been snowing for pretty much 14 days straight now. The kids went to school only two days this week, and in one of those days we got 52cm of the fluffy white stuff.

We are slowing getting to a point where I’m not sure where we are going to put any more of it.

People are on Facebook complaining and huffing and puffing. They are posting pictures trying to seemingly outdo one another about the amount of snow each one has had to clear from their driveways or road ways … all the time complaining and somehow bragging all at once. And although the complaining sometimes wears thin, I do love seeing all the unbelievable photos.

None of this is new really. This snow thing. It may be a little bit bigger than recent years, but I clearly remember years when it started snowing in November and didn’t end until late April. I remember growing up with many a blizzard.

And yes … there is a part of me come this time of year that wonders if I will ever be warm … I mean really honest to goodness warm … ever again.

But here’s the thing. I would rather shiver in the cold … here … in Nova Scotia … in the Annapolis valley … on the Bluff … than be lying in the warm sun anywhere else in the entire world. Because you see here … here is … well … my “Last Best Place”.

When I was a “displaced Bluenoser” living in Ontario I remember I clung to all things Nova Scotian. I don’t want you to think I didn’t love my time in Ontario. I did. It is a wonderful big beautiful province that provided me much opportunity. The same goes for Alberta and New Brunswick when I had the privilege to lay down both roots and wings in those provinces.

But my heart clearly belonged in Nova Scotia.

I remember while I was in Guelph I read a book that always stayed with me. It was written by John Demont and it was entitled “The Last Best Place”. The author himself was a displaced Nova Scotian and he had a theory that we all have one “last best place”. A place that calls to us. A place where we feel at home and at peace.

My friend and I will often say how much we enjoy going on vacation because we get to leave behind all the things that “have to be done” … the long list of logistical things like laundry and errands and packing lunches. And boy do I enjoy travel. I have long suffered from a serious case of wanderlust of which I indulge at least twice a year. And I would argue that I don’t think one can find their last best place until one has done a little travelling. Until you really know what else is out there, because your last best place isn’t necessarily the home you grew up in … for a variety of reasons.

But it is the place that you would rather be … when everything falls out of whack, or falls into place …. when all is said and done … when you are at your lowest point, or by contrast at your highest peak … when you settle into your soul … into yourself … your last best place is the place you would most want to be … even when doing the laundry and mundane chores. Forever.

And this place. This place on the Bluff, in the Valley, in Nova Scotia, the Maritimes and in Canada. This is, without doubt, my “Last Best Place”.

This place with its tree at the end of the road where four eagles sit waiting for me to see them soar, on my way to work each day. This place where I can walk out my front door and decide whether to take a stroll to blue beach or miles back into the woods. This place with the most stunning view of the water and green fields filled with hay as I sit on my front porch.

This place of kind, good, down to earth people. The type of people who care little about what you do, but so much about who you are. This place where it matters not how much money you make, but how much you can be of service to your neighbours. This place with roots so deep you feel like the ground itself is a part of you.

This three and a half acres of land that feels like we were ‘meant to find’ on that day back in July 2005. This place where we stop the car for guinea hens to cross the road, and for donkeys who have escaped to meander back to their pen.

This place where I can be part of university life and energy and opportunity just moments down the road. This place where I can work in my chosen field only 10 minutes from my home and where, for lunch, I can walk through campus to town and find my choice of coffee shops or restaurants second to none.

This place where my kids can roam and feel safe, both at the same time. This place so accessible to a big vibrant city, but that still maintains and celebrates its rural roots. This place of wide open spaces; of skies so crisp and clear you feel you can see every star there is.

This place of community hall dances and down home music. This place where I can be 15 minutes late not because of a traffic jam, but because I got behind a tractor or a school bus. This place of traditional orchards, and new luscious vineyards.

And yes, this place where I get to experience all four seasons. The sparkle of winter snow on the fir trees, the smell of Apple blossoms as I walk down my road in springtime, the sound of the waves and the heat of our favourite beach in summer, and the extraordinary beauty of Fall as I take a hike back behind our house.

I find myself constantly stopping and whispering thank you for this place.

Because this place will forever be MY “Last Best Place” … and I wouldn’t want to raise our family, live our lives, grow old together, or be still with myself, anywhere in the world but here.

Even when it happens to be snowing … again.