Until the call, I was feeling fine; suddenly I’m a bit shaken; nervous that I've been called so quickly?!

My doctor was on speaker phone as I drove my three young boys back from town to our rural sanctuary. They were all listening in and I tried to stay calm, but my fists were sweaty holding onto the steering wheel.

"I need you to come in asap; are you free tomorrow?"

Breathe Kylie, breathe. But my brain is screaming: Do high white blood cells mean Cancer?!!!

In that first phone call, I remember doing two things. First, I sensibly asked what my high white blood cell count was AND I tried not to panic. Focus on the routine - get home, feed the kids, bath, bed... google/call mum.

My medical history includes degenerated and prolapsing discs in my lower back so, later that evening, when all was quiet and after a bit of delve into google, I had self-diagnosed the problem as inflammation, or possibly arthritis and felt much better. I did see that a high white blood cell count could be an indicator for cancer but this primarily occurred in men in their 80's, which wasn't me. “I'm 40 and female, so definitely not my demographic” I consoled myself.

I also called my mother, who is a nurse, and she reassured me not to worry - my doctor is doing their job, hang on until the appointment before I jumped to any conclusions. I called a couple of friends to juggle my plans and children to fit in my impromptu doctors visit. I go to sleep. Little did I know but that was going to be my last sleep oblivious to my new condition. I slept well...

D-DAY

The next day, less than 24hrs after my blood test, I sit in the waiting room considering the knee pains I've been feeling and wondering if I'll find out the cause of them. I'm also massaging the weird lumps under my chin and beside my ears and wondering if my lymph nodes are fighting an infection? Or if they fight inflammation? I'm fit, I eat well, I'm young... I am well. I am not mentally prepared for the impending diagnosis at all!

My doctor gives me space to outline what I have googled overnight and my inaccurate self diagnosis before gently suggesting it is likely to be cancer, a blood cancer. I don't hear him. There is no way cancer gets diagnosed from a blood test. I'm looking for a diagnosis plan; I'm waiting for him to outline other tests we'll do; I'm expecting a process of elimination - landing at something far more manageable. He tells me he'll speak to the hematologist later today and call me back with a confirmed diagnosis.

No plan, no more diagnostics, no process of elimination... I don't compute any of it and walk out of his office stunned and in a haze of complete confusion. This was unexpected and I am reeling.

And you know where I end up? The library. I'm too scared to go home. “What do I tell my husband Anton? What do I tell the kids? How is this even possible?” So I wander aimlessly around aisles of books trying to find comfort in the wealth of stories, journeys, knowledge and expression bound in each one. Inside, my soul is screaming. Outwardly, I'm a zombie in human clothes. And I took 3 books off the shelf: two on hiking in NZ and one called "What I learnt from falling" - I figure I'm falling too and might need to learn something! And then I go home...

... and sit in my driveway, acutely aware this is a moment I will remember forever. The feeling of dismay knowing, that when I walk into my house, my husband is going to ask "How'd that go?" and I'm going to have to tell him I have cancer. And I don't even believe it yet. And I don't want it. And I don't want to tell him. And when I do, our lives are going to be changed forever. And I am stuck in the drivers seat of my car. And I don't want to get out. But I know I have to. But I can't.

And then Anton comes out of the front door and looks at me. He can tell something is up. I breathed in deeply. The next words out of my mouth will be some of the hardest I feel like I'll ever have to say: "He said I have leukemia."

We hug. We cry.

Courage, Love and Legacy

Diagnosis day is not a day any of us would choose for ourselves or our loved ones.

But you know what? It takes courage to take the next breath after diagnosis. It takes courage to step out of the doctors clinic and into an uncertain future. It takes courage to head home and tell family. It takes courage to cry and acknowledge the pain of this new reality. It all takes courage.

So if this is your D-Day and you're on the hunt for help to get through this. Take courage, there are others who have gone before you and others who will go after you. And we're there for each other.

Our courage comes from the love in our lives. Other people who care about us; who we care about. So snuggle up with someone who loves you and take comfort in their strength today. You had courage to find this page and you will have the courage to face tomorrow when it dawns.

Those first few days…

If you’ve been newly diagnosed and are searching for encouragement and perspective in your own first few days, you may find my other posts helpful a they share stories and insights from my first week or so with cancer, both the challenges and breakthroughs I experienced…

Then my mother offered another perspective. They're smart and they'll pick up on something being "off." What will happen when I have conversations with family and friends? Will I constantly want to be on guard, hiding it from them? What if they find out accidentally if someone else says something in front of them?

Tricky stuff.

We've always fostered honesty in our home, even on the tough subjects. I have a vivid memory of being about 10 years old when my great grandfather died. Mum took us for a visit days before he passed, but we weren't told it was going to be the last time we saw him, even though the adults knew. I have never forgotten the sadness, anger and disappointment I felt when I learned that I had not been given the full opportunity to say goodbye.

Earlier this year, my Nan died of pancreatic cancer. All three of our boys knew when she was diagnosed with it and this allowed us all to thoroughly invest time, love and intention into every month, week and day in the time leading up to her death. My boys visited her the day before she died and they got to say goodbye.

I knew I couldn't start another standard now. We are committed to honesty as a
family value and would figure out how to live that out now too. The boys had heard the first phone call from the doctor with my high white blood cell count... they were half informed already.

So, for me, the question shifted from "do I tell them?" to "how do I tell them?"

Family in all its fullness

I can barely remember what I said now... even though it was less than two months ago. It wasn't traumatic, in fact it was simple and beautiful; it was family, in all its fullness.

• We had the conversation in a safe place, our evening dinner around the table.

• I remember I was very intentional not to cry.

• I kept the facts short and simple, nothing complicated or confusing.

• I didn't make any promises about the future (good or bad).

• I highlighted the hope in the diagnosis.

• Anton and I sat where we could hold them, hug them, connect with them.

• We lent into our faith and Gods goodness.

• We gave them an opportunity to ask questions and respond.

• I checked on them each individually at bed time.

Out of the mouth of babes

What I remember most vividly of that evening are snatches of my children's responses: their search for understanding, their care and their strength...

Malachi, my eldest, had the big "why" question - one too hard to answer. With hugs and tears later that night, we both let go of the need for answers and, instead, decided the best we could do is walk into the unknown together, knowing we have each other.

Judah, my middle son, has a strong and tangible faith. When we snuggled up for bedtime prayers, he reassured me "it sounds like a mild cancer mum, and God is good." His simple statement of faith is a something I often lean into when I'm feeling less than positive about the future.

Ezra, my youngest, had the toughest questions later that night: Gran-Nanny just died of cancer - will you? Can I get cancer? Those questions broke my heart, but also offered the opportunity to reassure him. Both his grandmothers have had cancer and survived. Our neighbour has had cancer and survived. Other people he knows well have had cancer and are still living and breathing. In his young life, his only memory of cancer is a thing that caused his great-grandmothers death. My diagnosis gave us the opportunity to explore that life is possible with a cancer diagnosis and reframe it in his mind.

The days since sharing

In the first days after telling my boys, I'd check in on them every day. How were they coping? Any more questions? Any concerns/ fears? Malachi was able to reflect and empathise with another boy whose mother was going through chemo. Judah had a hard time in the first few days at school, so I told his teacher to ensure he had the support he needed. Ezra continued to live life with a clear sense of security in his surrounds.

I don't regret telling them. Initially I hated it; hated feeling like a burden, feeling like this will probably be a reason they'll need counseling when they're older. I was so hard on myself.

But they have been a light in my darkness. They've processed it really well, they've been resilient and it has brought us together as a family. We get to lean into each other for the care and support we each need. They are understanding when I'm feeling low and we savor the good times with a deeper appreciation for the blessing in the moment.

Courage, Love and Legacy

When our worlds are rocked with unexpected news and we're left reeling, it's not long before we start thinking about the other people in our world who might need to know. If we have children, they'll be up there on our consideration list. Do I? Don't I? How can I? Before we take steps in any direction, considering our "Why" or "Why not" is a courageous conversation to have with ourselves. Unpacking our "why" will help us get clear on our purpose, get clear on our motivation; it'll reveal the foundational values of what's important to us in this moment.

My "why tell them" was because I want to go through life fully with my children - demonstrating the power of love in both the good and the hard times. Once I was clear on my why, the what do I say and how do I set up the conversation to go well become much easier.

If you've found yourself in the position of having to have a cancer conversation with your children, take the time to peel back the layers and understand your own values, motivation and purpose for having or not having the conversation with them.

Feel free to share your why or why not in the comments below.

My maiden name "DellaBarca" can be directly translated to "of the boats" because my Italian family were fishermen by trade. For me, my vocation (or my work) has become synonymous with the image of a boat. Not a big fancy boat, but the hand-carved wooden fishing boats like my grandfather built.

A boat is a symbol of my family's trade and it is my way of visualizing my efforts, my investment into the world, my pursuit of purpose. Work is not my identity, but it certainly provides me with a vessel to contribute to something greater than myself. I'm fairly altruistic at heart and prefer to "work" for outward impact than for in-coming funds (this lofty intent was more achievable in my days before children, when we weren't paying every sports fee under the sun). Purpose and impact are what motivate me and have helped shape the vessels/vocations I've sailed in so far.

My Diagnosis Day occurs on a Friday afternoon and, it just so happened, that on the Saturday, I was booked in to facilitate a full day communications workshop with a gorgeous team of Pacific women and men, who do some incredible work in their community. On Thursday, the day before Diagnosis Day, I had done all the prep for the workshop - 22 sets of worksheets printed, coloured pens, post-it notes packed, powerpoint presentation ready...Me and my boat are all set to go sailing. There is great work to be done! Little did I know I was sailing into a storm.

And then I was in the water; capsized; floundering. Without a life jacket.

So you know what I do? I willfully deny the news (tuck it down, bury, blur, ignore), so that early Sat morning, less than 12 hours after receiving the shocking notice of my mortal nature, I drive out of my driveway and off to serve a mission greater than myself. What about work? Well, what about it? Life goes on, right? The world keeps spinning... and I am a very proficient swimmer.

Not true. My brain is starved of oxygen. My body feels the weight of the water all around me. My spirit is literally drowning in despair.

And I put on my lipstick and carry right on pretending.

The feedback forms from that day would tell anyone else that I did a great job. It was an engaging workshop. The content, commentary and connection was fantastic. More than passable. Good. Maybe even inspiring.

But, I felt like I was in a bubble the whole day; separated from everyone in that room by a wall of pain and confusion that they had no idea existed. I felt like was there, but not there; a stand-in was having conversations on my behalf, filling in for me; me but not really me. My brain seemed to work at a snails pace, sluggishly processing questions and hesitantly responding with answers. Barely following but not leading. I was in shock. Confused. Capsized.

My inner being just wanted them to know, to apologize: "sorry I'm so useless, that I'm not on form today - but I've got an excuse - really - a good one - I've just been told I have an incurable cancer and I have three young kids who I might not get to raise to adulthood!" Except they suspect nothing as I maintain a professional poise.

There is something to be said for autopilot - we are incredible at doggy paddling for awhile. Keep. That. Head. Above. Water. Just. A. Little. Longer.

You know what? I could have not gone to work that day. The world, their world, my world did not need me there. They would have completely understood. If they had actually known that was going on, they would have kicked me out the door (with a hug).

No, my being there was more about me feeling the weight of responsibility... ...for their learning?

Deeper than that...responsibility for our income...

Probably deeper than that...responsibility for my kids life...

Getting towards the bottom of it ....responsibility for my survival...

Just a bit deeper still... the responsibility to not let anyone else down/drown with me!

There, that's it. I'm carrying the responsibility of my own impending mortality and its' impact on everyone around me and I need to stay in control of something just a little longer. I CAN keep my head above water - just you watch me!

Alone, on my drive home, with no more busyness to ignore my predicament, I finally sink. On my way down, I realised I'm not doing a service to anyone; the C word is going to undo me, like it or not, and there will be a lot of snot and tears in coming days and weeks.

So, after telling my kids, and after talking to God, I had that brave conversation with my colleague; I told her that I needed some time to get my head around my diagnosis and she helped me clear my calendar. And it was the most freeing thing I could have done for myself. Acknowledging, not only my boat, but my whole world had been turned upside down and I now needed time to reorient and find my bearings. That's not weakness, that's a strength that comes with honesty.

Courage, Love and Legacy

CLL is cancer. Cancer is cancer. A chronic, terminal or curable diagnosis is still a diagnosis. And a diagnosis will rock our worlds in a seismic shift kinda way.
That took awhile to sink in for me. Probably right through the first week after diagnosis I was still on auto-pilot; managing, controlling, maintaining; keeping everything and everyone else around me buoyant. But that was unsustainable.

"Courage is not an absence of fear, but stepping forward despite the fear" (Kris Vallotton). Of course it can be scary to put your hand up and honestly say, "I'm sinking. I know I have responsibilities, but I also need some time out." But I encourage you to do it anyway.

Because people actually appreciate it when you do. Suddenly you've empowered them to have a role to play. They can help. They can shout out "man over board" and throw out a lifeline. My colleague couldn't believe I went to work that Saturday; was kindly incredulous that I hadn't called her and tagged out. People are so willing to step up and step in when we need them.

If we have the courage to ask.

If you're newly diagnosed and worried about work, drop anchor and give yourself the gift of a little time and space to absorb the shock, before trying to head out in the boat again.

Cancer is so prevalent these days - who doesn't know someone who has had it; battled it; recovered from it; died from it. Its tentacles reach far and wide and so the "C" words comes attached with personal stories, emotions, and responses and navigating those is just as much of a challenge as actually spitting out the words "I have been diagnosed with cancer."

My launch pad into this conversation had a confusing start when my doctor basically said because CLL is not an immediate death sentence, I probably didn't need to tell people, unless of course I wanted their attention and sympathy (?!).

I have cancer but my tribe don't need to know? I have just been launched on a personal roller-coaster of emotions and I'm going to be able to hide that from people? That's not me, that's not how I roll. I'm a wear it all on my sleeve kinda girl.

I trust vulnerability:

Vulnerability allows people to know where I'm at. When they share their hearts, it helps me have empathy and support them where they're at.

I've listened to some good podcasts over the years and, yes, read Brené Brown too. My favourite catch phrase when it comes to being transparent and honest with others is "Intimacy = Into me you see" (thanks Kris Vallotton).

To survive and thrive in this crazy thing called life, we need to truly see each other, to be authentic.

It is a powerful when, in Avatar, Neytiri puts her hand over Jake Sullys heart and says "I see you."

Inter-dependence

So, regardless of what the doctors says, there's no doubt about it in my mind; my friends and family need to know, so they can journey this out with me.

One of the pitfalls of western ideology is our deep-set worship of independence, of self-reliance and carrying the weight of our worries all by ourselves.

But I'm thankful I have traveled to and worked with other cultures and have grown to place huge value on inter-dependence; realising it is a strength not a weakness. Reliance on community. Leaning into each other and nurturing connection and care.

This year, I've facilitated team building workshops and asked people to share a personal need with their team-mates. I watched them cringe and squirm - it's uncomfortable - being vulnerable, sharing weakness. But when I ask the rest of the team how they found hearing each others needs - they loved it, because now they are equipped to help; they are empowered to understand and step up, to fill the gap and build a stronger connected community. Vulnerability allows us all to grow towards each other and in a world that is disconnected, distant and divided, vulnerability really is a super power.

Breaking the News

So with a value for vulnerability deeply ingrained in my spirit, I took a day to call those closest to me and those who need to know. To share my heart, my pain and my burden with my brothers, my grandma, my closest friends and my work colleagues. Each conversation is peppered with pain, yet seasoned with support.

Don't get me wrong, it was one of the hardest days I've ever had. Each time I had to say the words "I have cancer" I could feel the tangible shock and personal reaction to that news.

My first attempt was horrid; my poor brother just got a smashed out version of the facts. I dove straight in, hit it hard and fast, so desperate to get it out and on the table. But I got better at it as the day wore on.

I found if they didn't answer the phone immediately, then sending a text first that alluded to something helped ease others into the news:

• "Hey can you call I me, I got some news I need to share with you"

• "I have had some massive health news over the weekend, there will likely be tears, just saying"

Their Reactions

I also found not to expect any helpful kind of response from people. I had had a couple of days to process the diagnosis, but their reactions resembled mine in the doctors office on the first day. Shock, silence, incomprehension. That was probably the hardest part. Telling them felt like cruel - bringing a big black cloud into their day. Being the bearer of bad news sucks. And for me, I felt like I was ripping the scab off my wound every time I had to repeat the story.

Some cried. Others consoled. Some reached for hope. Others were pragmatic. Some I laughed with.

During the conversation with one of my brothers, it suddenly dawned on him that I might not be around to care for our parents in their old age and he might get lumped with that responsibility! What a laugh we had - the way we process news and what's important to each person. I was careful to let people respond however they needed to, no judgement.

By the end of the day, I was spent. Totally exhausted. And I hadn't even told everyone on my list. Vulnerability takes a lot of energy! Thankfully Mum came to the rescue with some great advice. "You don't need to be the messenger. Give people permission to tell others. That way it can spread naturally in the community and you can respond as people find out"

Free to ride my roller-coaster

Wow, that felt like such a big weight off my shoulders. I had done enough that day. Those that see me on the daily or who are immediate family knew and the rest would know in time. I was now free to ride the roller coaster where ever it took me. I didn't have to hide it or pretend to be anything other than where I was at on any given day ahead.

Courage, Love and Legacy

There is no right answer as to how you tell your family and friends. We've each got our own story that will influence our personal process for this. Some will be incredibly intentional, others will tuck it away, some will do it in person, others will announce it on social media. Whatever your method, I'd encourage you to dig into your values and try to understand what's motivating your process. Have the courage to look in the mirror and understand what makes you err in a particular direction. For me it was my value for vulnerability and desire for transparent connection with my community.

What is it for you....? Feel free to share your story in the comments below…

I don't really know what to do or where to go, so routine helps. Two days after diagnosis day, I head to church with my family. We go because our kids want to. They need to know things are still normal, they need a compass that still points north. My preference would probably have been to turtle away, but I want to create an environment of calm for my kids, so we go.

Our church is a small, rural Christian community. Over half the population are retired. There's a handful of younger families who have amazing energy and passion. Our worship team are incredible. They go after heaven every Sunday morning and God is always ready to respond.

Finding myself in unknown territory, unsure and reeling, I turn to what I know, what is safe and what has proven true for me in the past. In worship, I turn my heart to Jesus, trusting him to respond to my cry. I know well enough not to ask why?.. why me?... why this?... why now? - there is no answers there. Instead, I have learnt in troubling times to just ask to be held, to be loved, to be given the strength to take the next step forward.

So this Sunday morning I relinquished the need for answers and raised my hands and my heart, instead seeking tender embrace. Worship was like lightening for me. I desperately reached up and heaven extended toward me. That's how lightening works - heaven and earth reach for each other and connect with an awe-inspiring flash.

Revelation struck me as we sung a song "Egypt": I visualised the Israelites fleeing Egypt, taken through the Red Sea and I felt their experience tangibly. As God held back the waters for their release, as they walked in that unknown in-between space - between the old and the new world, I could feel their terror, their trepidation, and their courage. On both sides of them high raging waters frothed, behind them an army chased, and they had nothing to prepare them for the journey ahead. Everywhere they look, everywhere I look, uncertainty, turmoil, maelstrom.

Can you imagine looking up at the raging waters on either side of you, the impending threat of death all around?

This cancer journey, this exodus is an overwhelming event, a surging mix of emotional, physical and spiritual tensions.

In that moment of surrender, God showed me that the feelings I was experiencing - the turmoil, the trepidation, the raging, the fear of being swamped and consumed - they were all natural, and healthy, and okay.

Despite the physical and emotional reality I was facing, He promised to cover me with his super-natural hand of protection and care. Just like He did when the Israelites walked on dry land. Their journey took remarkable courage. And I was filled with that courage too.

It was then that I knew, that the days, months and years ahead of living with CLL would take on both a physical and spiritual form. My physical and emotional reality could be tumultuous, challenging and terrifying AND my spirit could be at peace, secure that I am held by a hand greater than my own. It isn't a one or the other reality. My physical reality doesn't have to discount the spiritual one; or vise versa. God assured me He can live with both.

"You have torn apart the sea, you have led me through the deep - Hallelujah"

I'm thankful for that very tangible picture, because as the days drew out after diagnosis, even though physically I'm still well, emotionally and spiritually there have been hard days. And in my moments of despair, I've been able to return to that gift - my exodus encouragement. When I fall into the trap of trying to find landmarks, trying to find solutions, trying to return to my before, I remember that even though I'm in deep water, I am also held; I am loved. And this gives me hope and courage.

Courage, Love and Legacy

Grace in the grappling moments is important for the journey we're on. With CLL, we're told, it's the best kind of cancer to have, to be thankful, we're blessed. This is not how I feel. I don't want to be a CLL patient. I don't want to be on a cancer journey for the rest of my life. I don't want to wonder and worry if I'll be at my children’s graduation, wedding, birth of their babies.... Feeling angry, upset, sad, grief, rage, confusion, frustration, fear - these are all natural responses to the threat we are facing. We have left a land we know and are heading into the unknown, a place full of uncertainty.

For me, I find my certainty in my faith. This is where I receive courage, love and a sense of legacy. God plants hope in my spirit, despite how I'm feeling. He encircles me and empowers me and gives me grace to walk through the turmoil raging in and around me.

Like walking down a Burma trail, blindfolded, it helps to have a lifeline to hold tightly to, that will guide and offer you comfort. In the rawness of these days, take some quiet time to discover what will help you on your journey into the unknown.

My big day back out into the world was also my youngest sons first day of school! To be honest, I was still in shock and denial, so it didn't quite dawn on me that I was not ready to be greeted by a hundred smiling friendly faces.

First Day of School

I was just focused on putting one foot in front of the other, and then the next one and then the next. Keeping routine, keeping normal. And normal told me it was my sons first day at school and I should be excited and happily walk him to his class room and settle him in and sit with him until he was ready for me to say goodbye. So that's what I was doing that Monday morning. Taking my baby to school. And taking the mandatory photo at the front entrance.

And that would have all been easy and straightforward if there was no other human beings in the world. But you know what? There's people out there! And they have no idea what's going on in my world. They are not aware that I'm holding something dangerous that bites, and hurts and causes damage. And so they merrily approach me, blissfully ignorant and unaware.

Smile and Wave Boys, Smile and Wave

As I looked up from the little hand in mine, I saw them approaching. Brimming with all the pleasant platitudes we give someone when their baby is starting school:

Wow hasn't time gone so fast?

Goodness he's got so big?

What are you going to do with yourself now?

Smile, Kylie; maintain the expected social order. Just sing off the song sheet!

Unspoken truth: Now? What am I going to do? Die? maybe live? Pray! Watch & wait...? I could hardly breathe. I felt claustrophobic and caught.

Needless to say, that was not the first day of school I had been imaging for the last five years! It definitely did not go to script. I was totally awkward with everyone; there was not one conversation that did not feel completely off: the principal, the teachers, other mums, kids... A friend asked if I could do some baking for the PTA and I almost burst into tears! She was perplexed to say the least. It felt like one of those scenes in a movie where the person turns and turns and there are people everywhere and they want to escape but they can't and it's all a frantic blur. I felt like a caged animal, desperate to escape, looking for the exit, but stuck, stuck, stuck in a social situation there was no getting out of.

Had I been thinking, I might have anticipated how badly that would have gone and come up with a different approach. I could easily have asked Anton to take Ezra to school. It would have been disappointing for sure, but probably really lovely for them. I could have waited until closer to the bell and snuck in late. Not the ultimate start for day 1 but passable.

I wish I had realised I was not really ready to get back into the big wide world that day, but I have grace for myself for how it turned out and I'm thankful others did too. Not long after my overly emotional response to the baking request, that particular friend checked in on me. And that time I was ready to share and she, with tender eyes, was ready to hug.

Courage, Love and Legacy

My spiraling re-entry into the wider world post diagnosis brings my husbands favourite meme to mind. It's one of people walking around with invisible bubbles of burden surrounding them:

After my "first day of..." experience, I'm much more aware that I walk in this world with an unseen bubble and so do others. I have friends that have gone through incredibly hard times over the last two years, others who suffer from depression, others yet who are grieving or battling or waiting.

We are often oblivious to what other people are carrying in their day. My experience reminds me to be mindful, thoughtful and graceful towards people throughout the day. There is many a day when we all need that extended to us isn't there?