Yesterday, at 9.32am, sitting outside a shopping center in my car, I hurridly ate my tasty takeaway museli and unceremoniously swallowed my last four pills (because I thought I had another days dose to go!).

Today, after a phone call from my nurse informing me my treatment had finished, no medicine accompanied my breakfast.

Last year, the beginning of my treatment was filled with apprehension, of being overwhelmed by medical risks and procedures, tests and new terminology. The completion of my treatment was heralded by no more than the clatter of my teaspoon in my empty museli bowl.

And yet, despite such a small, simple shift in daily routine, this feels so significant. Monumental even.

I have crossed an invisible threshold from being a cancer patient to being cancer free. I have also stepped from time on hold to gifted time.

Today is a gift, because without treatment, I’m not sure I would have survived another year. Tomorrow is a gift. Next month is a gift. So is next year. It’s phenomenal really. I’m in awe.

Today, I unwrapped this indescribly precious present. I breathed it in deeply. And my heart burst with gratitude.

I am grateful to God, my protector, my life blood, my hope and healer. I am grateful to all those who have lovingly walked beside me, every day or just for a minute. I’m thankful for both the dedicated and intermittent prayers of all those who have believed for my healing and health. I am grateful that my heart continues to beat. For the life giving breath I deeply inhale. For still being here to love and laugh and live.

Tomorrow, I will wake to a dawn full of possibility and potential. For the first time in years, I’m excited about what the future might hold. It has not been easy having plans on pause for so long. I have so many hopes and dreams. Sometimes I don’t know what to focus on first. What I do know is that my DNA demands a purpose driven life. Every fibre of my being wants to squeeze the most out of this gifted time I’ve been blessed with.

Truth be told, mixed in with this eager anticipation, there yet lingers an underlying hesitancy. Although treatment-free, I’m still on this trial for the next 5 years, which means every three months I’ll be back for monitoring - blood tests, specialist appointments, CT scans and possible future bone marrow biospys. It means I’m going to be really well looked after (yay!) and also means that my life will be strung out into 3-monthly intervals, always facing the nagging uncertainty of what my blood tests might show since, medically, the leukemia is expected to return at some stage, be it one year or ten (let’s pray it’s ten).

But knowing this motivates me all the more to treasure the time I do have. I don’t sit with a comfortable confidence of continued health and reaching old age. I cannot afford the luxury of postponing hopes and dreams until a later date. I live for the present, pursuing and cherishing moments that matter. And I think this perspective is a gift: not taking time for granted, but embracing the fragility of it and finding beauty there. By nature we humans are both incredibly strong, yet simultaneously vulnerable. In this tension, between our perservering endurance and our fleeting impermanence, hopes, dreams and aspirations can be fully ignited. When we no longer slip into complacency but embrace the precarious position of living life permanently on the edge of eternity. Here faith, hope and love abound.

And so with great anticipation, this chapter known as “Treatement Trial V&O” is closed and I begin a new season entitled “Gifted Time.” Here’s to unwrapping it’s layers with you.

With Courage, Love and Legacy

Kylie

I received this news just as my family and I were heading off for a wonderful adventure in a remote area of the Coromandel, exploring a friends huge tract of native bush. In hearty 4WD territory, we bumped up hill and down dale to reach their humble off-grid abode. We lunched with views out over the vast ocean, fully satisfied by the goodness and richness of life. On foot, we then meandered for miles along rugged roads and tree shaded trails to discover a secluded sun-kissed bay where we could swim, fish, relax and explore. We savoured time together, healing, hope, life.

I couldn’t have imagined a better way to celebrate my results and the closure of 2024. It was a very special, gorgeous and stunning day and one that will forever be seered into my heart and memory.

The Sunsets On 2024

For me, 2024, my year of treatment, has been a significant year of learning to grow in the wilderness. Of drawing strength from deep wells despite the arid environment. I have walked through valleys of apprehension, depression, anxiety and fear. Yet on that dark road I have firmly cemented where my confidence is rooted, where my hope comes from. 2024 has been intense and profound and I think, at it’s conclusion, my internal condition, my wairua, can be summed up by this verse…

But blessed is the one who trusts in the Lord, whose confidence is in Him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when the heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”

Jeremiah 17:7-8

As I soak in the sunset of this year of treatment, I’d like to thank you all for the incredible support, prayers and encouragement Anton and I and our family have received this year. Many times I know we’ve been carried on and sustained by the flow of aroha (love) directed our way.

Borrowed Time

While CLL is considered medically incurable and predicted to return at some stage in the future, I am now blessed with “borrowed time” and look forward to continuing to share my journey with you as I live with purpose and appreciation of every valuable and precious minute I have been gifted.

2025 is a year dawning with the promise of health and hope. For me, it will be a year of restoration. Of living in the fullness of being cancer free. There’s lots of great things we are readying for as a family in this coming year and I intend to extract every drop of goodness out of this next season.

A toast to the dawn of 2025

New Years Eve is a time to reflect on both the road we’ve travelled and also look to the horizon with anticipation of what comes ahead. I’m excited about what 2025 has in store and am grateful to be here to celebrate the dawn of a new year with you.

Bless you all with ample helpings of courage, love and legacy for your 2025.

Kylie

For 2024, here’s some of what I am so very thankful for...

Treatment

• For treatment, full stop.  In some countries, I’d be dead by now.

• For a clinical trial, with drugs I wouldn’t have access to otherwise, being available just when I needed it.

• For my nurse who is so kind, attentive and considerate.

• For my doctor who takes time to answer all my questions, of which there are many!

• For treatment drugs that have had but a few side effects and still allow me to function in normal life.

• For a very smooth start to treatment with none of the serious risks.

• For free access to a psychologist when I desperately needed one.

• For people persistently advocating for better treatment options in New Zealand.

• For my restored health! 

Care & Connection

• For all the support and inspiration I get from my husband to look after myself. To sleep, to eat well, to play, to retreat.  For all he does to hold up our family when I am weak.

• For the childish faith and contentment of my children.  Despite all the cracks I see in the foundations of this world, all is well in their world.  This gives me hope.

• For loving parents and parents-in-laws who feel this journey deeply too.

• For the genuine check-ins and touch points from the bros.

• For friends and community that load us up with generous helpings of aroha (love), prayers and nourishing food.

• For each text or call from near or far that offers heartfelt care, hugs, promises, encouragement and love.

• For the wonderful people who have come around our boys to sow into their lives through friendship, fun, work and mentoring opportunities.  I am so grateful for a community raising my children.

Thriving in Life

• For getting up on my skis this year and racing down the mountain with my boys.

• For our family’s fervent dancing at Anton’s big birthday, celebrated at womad.

• For time with my Grandma, and other older people, capturing their Recollections, their stories; it is such an honor to sit with someone and hear their life legacy.

• For moments of special connection, heart to heart, with precious people.

• For my blog and vlog (which recently won an award!) and all the opportunities to encourage others through my story.  I am so grateful for people’s precious and powerful responses to what I share.

• For God providing our daily bread.  Being sick takes it’s toll on finances, yet our basic needs are always met.

• For music, praise & worship. On my worst days, their soothing sounds lift me off the floor.

• For a marriage of almost 20 years... for living life with Anton through all the seasons!

• For wonderful children, who are growing into great young men.

Growing Great Things

Although diagnosed with cancer, what I choose to live with is Courage, Love and Legacy. I think gratefulness is a legacy that can be sown, even in the harshest winter seasons. It’s one of those seeds that can still sprout and grow even in the hardest, driest, rockiest of soils. And when it’s in blossom it stands out, especially in an arid environment. People are drawn to it because they wonder how it came to be there. They can’t help but smile at it, because there’s an alluring beauty to be found in the bright boldness that declares “there is great things at work and I am not going to be dragged down!” As crazy as it can sound, sometimes I’m even thankful for my diagnosis because of the precious perspectives on life and love and priorities it has gifted me.

Courage, Love and Legacy | Points to Ponder

As this year draws to a close, turn your thoughts back over the last 12 months.  

• What has been good?

• What has brought life?

• What blessings have you experienced?

• Where did you discover delightful surprises? 

Make your own list of all that you are grateful for.  As you do, feel your spirit lift and life sparkle.

Be blessed with Courage, Love and Legacy

Kylie

Over the last few weeks, as the clock has ticked down to this appointment, I have felt apprehension building.  I recognise it more acutely this time, because, for a short blessed period, the dread was been almost absent; I have enjoyed a time of respite, of living free from that little voice of uncertainty scratching incessantly under my skin. 

The Wrestle

But it came back with a roar.  Literally, one day recently, I was having an afternoon nap when I was woken by an urgent, aggressive roaring in my ear as I was simultaneously jolted by something electric smashing into my stomach.  Fear.  Belting out violent threats of death and destruction.  I’m familiar with it’s unrelentingly cruel hard stare, it’s hideous life draining presence. Since it slammed into my world, unwelcome and uninvited, I’ve felt like my mental well-being has been locked in a feisty wrestle.  

On one side, peace, my valued champion has been fighting hard to hold ground, while on the other side fear leans in, merciless and menacing, straining heavily down, aiming to gain another inch.  It’s been a weighty few weeks as this wrestle has played out in my thought life each day.

Over the last two years of this cancer journey, I’ve talked to other people who experience this wrestle with scanxiety.  Some hold their ground, while others become overwhelmed by anxious thoughts, plagued by fear, held captive by concern.  I’ve been there too and it’s a miserable existence.  Not just for me, but for my whole family.  When the vortex of despair threatens, it sucks in anything and anyone in close proximity.  My husband and children start feeling the thrashing flicks of fire that whip out unexpectedly.  My short, taunt responses.  My lackluster energy.  My simmering angst.  With life stunted already, I cannot afford to let apprehension or fear steal any more of my time from me or my family.

Determined to Thrive

As I can’t do anything about the external threat I face, my only option is to focus on the battleground over my internal well-being.  And this time I’m consciously determined to find ways to thrive, to live in joy, hope and freedom despite the circumstances I face.  I believe it is possible to abide in peace even while surrounded by the most raging, wild, catastrophic storm.  I’m sure you’re familiar with stories of people who face terrible atrocities and circumstances yet their internal reality looks exceedingly different from their external reality.  Our history books are full of them.  Theirs are the stories of courage, resilience and overcoming that we write books and make movies about.  I’m currently reading one by an inspirational guy, Nick Vujicic, who was born without arms or legs, yet has and shares an absolute passion for life.  Although he cannot walk, he stands strong with astounding and infectious courage and positivity.

As I walk towards my verdict appointment, I’m finding ways to tend to the health of my heart, to stand in courage and walk in peace.  I’d like to share a few of them, so that when you too find yourself surrounded by a world of potential dread and despair, you have some bread crumbs to follow...

Incline my ear

This morning I wrote the word “fear” in the sand.  Determined to face it, then erase it. I noticed that fear contains the word “ear” and realised that fear comes from where we face our ear.  If we give our ear to the thoughts of anxiety, worry, concern, doubt, harm, hurts, uncertainty, darkness, then we give fear a captive audience.  If we incline our ear to hope, to “hear” thoughts of life, health, goodness, blessing, wholeness, thankfulness, gratitude, rest, then we will walk in peace.  When we face a dark valley full of fears, we have two choices aye? Get caught up in the deep darkness, or seek out the light. I want to always be known as a light seeker. I’ve made a list of promises that bring my heart hope and choose to repeat them over myself, until my internal reality lines up with the hope I want to experience. 

Relieving stress points

Being in touch with my feelings of vulnerability and apprehension means I’ve been able to communicate them to close friends and family and ask for their prayers and support.  It’s a way to release some of the pressure that’s building.  For example, I’m likely to get my bone marrow biopsy results about a week before Christmas.  I’ve already identified that’s likely to be a week full of high emotion for me and asked my husband to step into family conversations around Christmas logistics and food, knowing I might be a bit on edge.  Relieving stress points is key to walking in peace.

A horizon of hope

Summer is bursting in New Zealand and with it come the summer holidays.  I’ve tried to be intentional about putting things in the calendar that I can look forward to. Having activities on the horizon that inspire hope and joy keeps my head held high with anticipation rather than apprehension.

Sleeping

I find in times of stress, my body’s natural response is to sleep.  I know for some people stress keeps them awake at night, but for me, I genuinely need more sleep.  Even afternoon naps.  Not every day can I sneak away for an extra kip, but when I can, I do. Anton is really supportive in the late afternoons or weekends, making space for me to slip away to catch some zzz’s.   Sleep gives me a mental break from the constant environmental scanning for threats.  Sleep is restorative and healing.  Sleep says, I value myself, I value rest.

Firm foundation

This week, I have sought out every Bible verse that declares “do not fear”, alternatively translated “do not yield to fear” or “do not surrender to fear.”  Each time someone is encouraged not to fear, it is coupled with a powerful promise from God. 

“I will not leave you, I am with you, I hear you, I will help you, I will protect you, I will save you, I will fight for you, I will go ahead of you, I will remove your burden, I have called you by name, you are chosen.” 

Knowing I am not alone, that I am loved, that I am upheld, provides me with strength, courage and a firm foundation plant my feet on. 

Pursue Peace

And you know what? Although fear stomps around the perimeter, yelling threats and trying to make a scene, with my heart firming fixed on pursuing peace, I can honestly say all is well; I’m ready to head into those tests. Please continue to pray for me and for amazing results from this treatment, your care means a lot!

Courage, Love and Legacy | Points to Ponder

The opposite of courage is discourage.  For courage to disappear, to run out on us, leaving us afraid and vulnerable.  When we face external threats we need to be infused with courage, encouraged, to prevent being overwhelmed.  My hope is that my musings encourage you today.  If I can face this desperate journey, with peace, hope and even joy, if I can discover contentment on the edge of eternity, you too can discover internal well-being regardless of what fears you must face.

• Do my descriptions of the threat of being overwhelmed by fear and apprehension ring true for / resonate with you?  Have you ever found yourself in that raging wrestle for peace?  What did if feel like for you?

• How do you usually respond to external threats?

• What truths have you found that help you build up your internal strength, courage and resilience?

Be blessed with Courage, Love and Legacy

Kylie

When we think of independence we think of freedom, choice, going places, having control of our own destinies, self-determination, individualism, capability and competence, strength. Dependence is perceived as almost the complete opposite of these.

But not so in all cultures. I used to run strengths based workshops with people from the Pacific and when we were going through a bank of strength/weakness types of words, they would deviate from my preconceived ideas and definitions of ”independence” and “dependence”. Dependence was always placed in the strengths; independence in the weakness boxes.

And so I’d unpack it with them, and discover a beautiful perspective that challenged my own cultural values. Independence meant isolation from the community, forging your own way at the expense of family and friends. Dependence meant you would lean on each other for support and care, it meant you had connection and fellowship. Completely counter-cultural to our western understanding.

Independence as we know it…

I’ve been having a reflection time on independence and dependence over the last months as my children grow into teenagers and start madly flapping their wings, preparing their bodies, minds and spirits to take flight. As a parent, it’s an emotional time. There is great pride in their growing confidence, skills, and perspectives. There is also a shadow feeling of loosing them, of abandonment, of loss and sadness.

I’ve felt this acutely as I’ve spent the winter months up the mountain with them. I have been excited that my treatment has been working and I’ve had the energy for days of adventure and skiing and that I’m able to participate with them in something that they love. Yet, I’m much slower and far less adventurous than they are. And so, most of my day is spent with my youngest son (who is also faster than me), while I scan the slopes to see my two eldest flying freely. As they lap me time and time again, I might be lucky enough to catch them doing a spectacular jump as I head up the tow bar and I’ll wave and cheer hoping they feel their mum’s celebration. Internally, I hope, just one time they might wait for me, but they’re in their own world, so lunch time, when their hungry tummies are crying out for fuel, is about the only time they feel the need to check in. They’re in their zone. They are independent, free and capable. They’re loving it. They know I’m close by, and that’s enough. (and just because I can - just look at them fly!)

And because I love them, I’ve tried not to get resentful, offended or feel neglected. These are shadow feelings that I don’t want to give too much power to. Because we celebrate independence. So why does it feel a little bit sad?

Because then there’s the mornings when they all choose to come snuggle in bed. Sometimes in the weekdays, and almost certainly in the weekends. Uninhibited, tender connection time. No matter how big they’re getting, we can always fit with a bit of wiggling and kicking to get comfy. One on each side of me, the other close enough my hand can stretch out and stoke their hair or sit comfortably on their shoulder. While they yearn for independence, there is still that feeling of wanting to come in close, to be dependent, to find attention, affirmation and warmth. And I treasure these moments so much! I treasure it with my kids. I treasure it when I visit my own mum and can still go hop into her bed with a cuppa for a catch-up before the day runs away.

We have this tension in our hearts between wanting our independence from others yet needing to be dependent on each other for love and community. It happens when we’re young, it happens when we’re old, it happens when we’re sick, when we’re well, when we’re rich, when we’re poor.

Upside down, inside out and backwards

And I wonder if we’ve got our priorities upside down? If our understanding of independence vs dependence is weighted too heavily in favour of freedom over connection? Do we need to turn our priorities inside out and backwards to really see clearly?

In worship the other day, I was bringing my heart before my heavenly Father and He reflected my own parental heart back to me. He showed me how we are like my kids out on the mountain having fun, doing our thing, being in the zone, only checking in with Him when we need something. And He watches, cheering us on, but man, He’d love for us to ride with Him more often. To do life together. Even if it means we need to slow down a bit, it’d be way more fun. He loves those, often fleeting moments, when we snuggle in close and share heart to heart. He longs to abide in that place way more often. His door is always open. He loves when we are dependent on Him, yet most of our lives, in pursuit of independence, gets in the way. With our relationship with Him. With our relationships with each other.

As we had this conversation, I got a distinct impression that maturity might not be becoming more independent, but might be more about deepening dependency. I recently heard a saying “at the end of the day, we’re all just walking each other home.” Walking together on this journey home, is a journey of dependency, is it not?

As I’ve sat with other people with cancer, as I’ve sat with people who are aging, I see this so clearly. We can’t do this stuff alone. We need to relinquish our need for independence and learn how to lean on each other. I’ve had to learn this over the last few years as my health has let me down. And even as I write that sentence, I wonder, has my health let me down or has my ill health helped me grow stronger because dependency is a strength? Has it helped me learn to appreciate and lean into dependency? Has it in fact given me more freedom? The freedom to trust, to let go of inhibitions and barriers, the freedom to be know and be known, the freedom to see and be seen. The freedom to receive and give love.

Vulnerably Upheld

I have a friend who is on palliative care journey, and the other day I watched him walk out of church, upheld by two friends, holding his hands, taking his weight. It was so intimate and profoundly beautiful. Inspiring. Holy.

It’s a vulnerable place, being dependent. It takes openness, it takes humility, and it often takes brokenness. Yet I wonder, do we have to be broken down by sickness, aging, trauma or something devastating to become dependent? Is there a way we can deepen dependency, humility, vulnerability and connection because it’s something we value? Are we willing to relinquish our tight grasp on our claim to independence in order to hold hands with our friends, even when we don’t need their aid and support?

Rather than seeing strength as independent fame and fortune, can we shift the frame to see strength as walking together, arms and hearts linked with vulnerability, laughter and love?

Courage, Love and Legacy | Points to Ponder

I still have a long way to grow in the area of dependence. I have 42yrs of listening to to the raucous megaphone of culture telling me my wants, my rights, my truth, my purpose, my platform is the priority. There is a lot of re-framing to do here. The first step is awareness, naming this tension and then a daily willingness to critique and adjust my perceptions, values and behaviours, to tune them into a frequency of dependency. I want to grow in my willingness to vulnerably upheld, by both God and people. We were created for relationship after all.

This could be an offensively counter-cultural message I’ve written today … yet hopefully, in it, something tugs at your heart, a quiet truth that yearns to be heard.

• Take time to explore your own thoughts, feelings, mindsets and beliefs toward those two words: “independence” and “dependence.”

• How do you think you’d face situations in your life where you may need to be dependent? What feelings and responses come up? What fears? Will they help or hinder you when that time comes?

• What would it cost you to loose your independence? What could you gain?

• Take time to notice, name and challenge your own perceptions, is there anything you need to adjust to walk in the greater freedom dependency offers?

Writing helps me cement something in my own life, and right now I’m reflecting on the fact that being on treatment is teaching me that taking time to rest and refresh is essential to survival. After a very intense first few months of treatment, I accidentally had a trifecta of “Kylie time” in one week… which is pretty much unheard of in my world. It started with a massage (my mother’s day gift), then an impromptu dinner with a friend I haven’t caught up with since diagnosis, followed by a time at “look good, feel better” - a self-care makeup session especially for people going through treatment.

I had not intended for such a wonderful line-up: the makeup session was the only thing I had intentionally booked as it fell on the last day of the school holidays and I had strategically figured I’d need a morning out by then. But then the massage date got shifted into that week to suit the therapist and my friend just happened to catch me in a moment where I was realising I need to say “yes” more often.

And it all wove together to be a very special week of “tender treatment” and through it I discovered a nugget I need to hold on to - that time out for “me-treats” are good for me and good for my family…

Tender Touch

My massage broke me, in a very good way. As I lay there, firstly thinking about how I wanted the therapist to apply more pressure to get the knots out of my shoulders but too shy to ask, then trying to convince my mind to relax and enjoy it, to being rolled over and suddenly being overwhelmed by emotions.

When she began gently massaging my left hand, unexpected silent tears started raining out of my eyes - and I couldn’t even wipe them away. From deep inside me came a yearning I hadn’t given voice or attention to. Suddenly I saw that my body had become a medical pin-cushion, jabbed with needles on a far too regular basis, and an object for results to be analyzed, and I had lost a sense of connection to or compassion for it. We are embodied spirits, and what happens to our physical being effects us at a much deeper level. As she massaged my hand and arm, that has been subject to an uncountable number of injections and blood samples, my whole being responded to the tender touch I was experiencing. I felt a whisper in my spirit that I was loved and held with compassion and care. I was able to release and let go of some of the confusion and tension that I’d been carrying. It was so moving, so beautiful, so needed and so healing.

Soul Food

Second up was my impromptu dinner with my friend. We’d hit and missed so often it was looking almost impossible to find a date with each other and, to be honest, my mental state has not been overly positive, so hibernating at home has felt like a safer bet. But after my massage, when she texted, I thought - '“I probably need this too” and I was right. Once we had established cancer talk was off the cards, the evening was soul-nourishing.

We talked about our hopes, struggles, our families, middle age and how our perspective shifts so much, money, connection, growing spiritually. We were both so hungry for authentic, vulnerable conversation. We both had a cupboard full of ingredients that needed sharing… and as we nibbled and tasted each serving, we laid our hearts bare. Our morsels of realness were garnished with laughs and tears. And it left us feeling nourished and satisfied. And do you know the best thing? We both agreed this time of life calls for less catch-ups of coffee and more memory creating adventures. So we have booked in not one, but two overnight hikes before the end of the year.

A Make-over

My last “Kylie-time” treat was a morning spent with other courageous women facing a wide range of cancer diagnoses. On the surface the Look Good, Feel Good session was about learning to apply make-up to counter the horrible side-effects chemo and radiation. On a deeper level, we were there to refresh our confidence and our outlook. Now, again, I am not a makeup person - my last eye shadow set has lasted over a decade! So unpacking a box of cosmetic treats was something I was decidedly unsure about. But I had signed up to do something different, something feminine and inspiring. And I loved it. The makeup part was fun, but the conversations with the others was fulfilling. Each women was facing significant challenges - from loosing all their hair and eyebrows, to fingernails falling apart, to skin rashes and pale pallor, to worrying about time left with their children or grandchildren.

It was a very humbling occasion and particularly moving when each frail-looking woman ceremoniously removed her purple makeup cape and revealing her remarkable transformation to a glowing, stunning, courageous face of hope. It was profound. Again, tears the came. Such beauty found amongst the devastation. I learnt that day, that make-up done with love is like art, and it has the subtle power to renew a person’s self esteem and shift a broken spirit to a valiant one.

Get Out The Diary

Writing and remembering all this, inspires me to sit down and make a list of things that bring joy and fulfillment and book them in my calendar. Now. Because time slips so easily between the cracks of responsibilities, jobs and the family to-do list.

Treatment is a time where there is a lot going on for us. Body, Mind and Spirit. Because I’m on a targeted treatment, with very few side effects, I’ve found it quite easy to just carry on as if life is normal (or at an even higher intensity). And there is a degree in which that is helpful. But as I discovered on the massage table, there is also a degree to which it is not.

With my mortal clock ticking, I have a relentless inner driver who puts intense pressure on me to always be there for my kids, only do things of significant purpose and meaning, to not let time slip by on “frivolous, self-serving” activities. I’m working on dialing down the volume on that voice. My goal is to take back the keys and learn that taking time to rest and restore is not taking away from the others in our lives, it is in fact, ensuring we’re not depleted and exhausted and can be happily present with them. It is a gift to ourselves and a gift to our loved ones.

This may come naturally for you, and if it does, I honor you for finding a rhythm that is healthy. For me, I am a work in progress, and it’s often one step forward, two back. But today I’m celebrating three steps forward!

Courage, Love and Legacy | Points to Ponder

I’ve shared my wrestle with self-care as well as the fun and fulfillment I’ve found in it recently. You may be like me and find yourself regularly putting everyone else’s needs before your own, or you may be someone who has established a healthy balance of self-care, or you may have tipped the scales too far and be neglecting others to ensure you thrive.

Where ever you might be on that spectrum, this week, take some time to consider...

• what does self-care look like or mean to you?

• how in touch are you with your needs as well as the needs of your loved ones? Is the priority weighted more heavily one way or another? How can you bring some balance?

• think of a time when you experienced an occasion of self-care where it has nourished you - what was the nugget that came out of that experience?

• make a list of fun and fulfilling treats that you enjoy and that nourish your spirit. Book time to do them in your diary. Now.

Be blessed with Courage, Love and Legacy

Kylie

When I signed up for this treatment trial in March this year, I had no control over which treatment arm I would be selected for. To me, Arm A represented newer drugs with greater efficacy, and less side effects, as well as a much less arduous treatment regime. Arm B represented a higher risk of scary side effects and a complicated first few months that would be logistically demanding on our family.

As the days ticked down to the day of determination, I felt that, hiding in the fog, were two unknown creatures, one friendly, the other foe. And I just had to sit, watch and wait to see which would emerge.

Sitting in that discomfort I was aware that what emerged would not just impact me. The impact of the trial arm was a whole family affair. Arm A was a daily pill. Arm B kicked off with a hospital stay and weekly infusions. I’m not sure I succeeded in keeping my preference to myself… I was hoping and praying for Arm A for many reasons and the boys knew it.

Disappointment is Difficult

But it didn’t eventuate and Arm B, the one I feared, was the card drawn. I was deeply disappointed. That day, a Friday, I had four hours to myself. Four hours before school finished and I faced the inevitable question from my boys… “which one was it mum?”

How was I going to answer? Was I going to invite them into and overwhelm them with my disappointment and fears? Was I going to mask my emotions and “keep calm and carry on?” Could I conceivably answer them with honesty, vulnerability, and hope?

In addition to my disappointment, I was once again facing my greatest weakness, my own mortality. My need for drugs to keep me alive. My lack of control and choice in the process.

Four hours is not long to work through all of that. But with intention, it can be done. For me, the key was acknowledging the problem, the hurt, the confusion and the fears. I didn’t want to give power to the problem, but I knew if I buried it, it would permeate my thoughts and actions and continue to cloud my perspective in the days to come. So in those time-ticking four hours I got really real with God: I sobbed, I cried, I questioned, I slept, I shared, I wrote, I reconciled.

And then I drove to pick up my boys, and, having somewhat dealt with my disappointment, answered the question that tumbled out of each of them in turn. With an authentic hope that I had received from heaven.

I don’t want to minimise how hard that day was.

Looking into my kids eyes, I knew they too were disappointed. Less so because of the potential implications I was fearing, more so because they knew my hearts cry wasn’t answered the way I had wanted. They were now watching me and how I continued to deal with that disappointment.

The Hard Hits

This is difficult. Processing our disappointments is not easy. Processing disappointment and unmet prayers with children adds further layers of complexity.

We want our children to grow up with a sense of hope, possibility and freedom - undeterred by the hard knocks of life. As adults, we’ve all taken some solid blows, and that disappointment and pain can scar us and reduce our lives to the limits of our perceived safety.

So when we’re taking the inevitable stomach punch, do we shield and protect our children from it’s raw reality? Do we allow them to witness the struggle, the wrestle, in the hopes that they’ll also be on the sideline to see the evidence of courage, strength and determination as we rise from the floor once again?

Reality can disappoint us. Regularly. And also disable us if we let it. But it doesn’t have to and I believe this is what our kids need to see. That we can take the hits AND come back from them, maintaining our dignity, our grace, our enthusiasm and our hope. As we raise and release our children, they are going to find life can be full of disappointment, unanswered prayers, and their youthful optimism will be refined by the friction and pressures of life. I haven’t yet discovered a way to avoid the hard hits; has anyone? Therefore, one of the greatest gifts we can give our children is the tools to rise again and again and again.

So in some ways this cancer journey is a blessing. Yes it sucks, it’s “unfair”, it’s cruel, and hard and disturbing and debilitating and discouraging … Yet, it also becoming my testimony; an hour by hour, day by day, month by month a way for me to demonstrate to my children courage, strength, faith and hope as I rise up from each blow. Sometimes I take longer to get off the floor, other times I bounce back vigorously. They get to see this, they get to watch and observe, learn from and participate in it.

Obviously, I’d love to have a different story to walk out with them. I’d love for their childhood not to be marred by the “C” word constantly hanging over our heads. But this is our reality. It’s raw, it’s real and it has the power to make or break us. We might not be able to do much to change it, but it is up to us how we choose to respond to it. Do we keep beating ourselves up with it, or do we fight to protect what is important to us?

I realised the day of the Trial Arm selection that we had all been hanging on to a thin tenuous thread, as though a Trial Arm could determine our reality. Sure it would have an influence and impact, but our reality is based on so much more than a drug cocktail or a logistical dance. The fullness of our reality is founded on trust, faith, hope and love. And we have an abundance of these.

Rising Again

It is important to me that my children have a strong faith and an indestructibly hopeful spirit. As we walk out this struggle, Anton and I get to hold their hand, guide them through the pain and disappointment, equipping them for their own journey ahead. And as we walk it out together, the most important thing I hope they learn is that they they’re never alone. As we grapple with the hard-hearted face of reality, we are never alone.

I couldn’t do this without my faith. Without knowing I am never alone. This is what keeps me hopeful. This is what keeps me rising off the floor. Knowing that the impenetrable goodness of God enfolds every aspect of our broken humanity into His care.

I might not understand why I have cancer. I might not understand why my prayer for trail arm A was not answered. I might not understand why there are all the problems we see in the world. I have no sufficient answer as to why we experience so much collective disappointment and pain. I do know that no one is immune or exempt from this stuff. Our world is awash with it, drowning in it. So firstly, I try not to sink into my own disappointment and I also try to walk in the faith where the weight of my burden is shared.

For me, I know the person I entrust my life to rose with wounds. Knowing that Jesus choose to walk this hard road too is what enables me to live in the precarious space between healing and hurt, joy and disappointment, hope and despair, danger and wonder, broken and whole. This is what enables me to rise from disappointment with renewed optimism and hope and a burning desire to impart that to my children.

Courage, Love and Legacy | Points to Ponder

This has been a difficult blog to write. I’m not sure writing this resolved for me the question I held of how to comprehensively deal with disappointments and difficulties. What I’ve revealed is my hearts cry to discover and walk a path that leads to wholeness despite them. And in all honesty, I’ve realised that navigating this for my own heart and the heart of my children is daily struggle. Yet every morning we rise. I hope in here you found glimmers of truth and of hope that resonate and offer you something that helps you on your journey.

Just as I’ve explored my own process for dealing with disappointment, take time to consider your own way of navigating and rising above life’s difficulties…

• what do you do when reality kicks you down hard?

• what helps you rise off the floor, re-calibrate and keep going? Do you sense a hand outstretched, ready to help lift you up and carry you forward?

• are there areas in your life where you know disappointment has robbed and limited you, where you’d like to regain hope and freedom?

• how do you equip your children to deal with the inevitable struggles of life?

Living With Courage, Love & Legacy

Kylie

These metaphorical mountains take their toll, but we hope, when we overcome them, we have grown in strength, stature, wisdom and integrity. That they don’t defeat us, but instead we find a higher perspective from the top of the mountain; a perspective that we wouldn’t have had if we hadn’t climbed up.

Cancer is a metaphorical mountain. Access to modern treatments in NZ is a metaphorical mountain** I face both with courage.

Overcoming Mountains

In recent years there are two mountains that I have been enriched by. Both start with a metaphorical mountain and finish on a literal one.

Three years ago, I had back surgery after spending 10yrs in chronic back pain. After experiencing multiple acute and debilitating episodes, where I often couldn’t walk, I was finally approved for a micro-discectomy to remove the protruding culprit disc. At that stage I had been unable to walk for 6 weeks and had a completely numb foot.

After surgery I had a choice, live in fear of re-injury, or muster up the courage to get active again. I chose courage. My 40th birthday (the top of the mountain right?) was coming up in nine months time and I desperately wanted to be able to adventure with my active children. So we set a goal. To climb a mountain - specifically do the 3 day Tongariro Northern Circuit Hike. A huge undertaking for someone who weeks ago wasn’t walking. But with a lot of support and determination, for my 40th birthday, I found myself, with my family, on the top of Tongariro. Love, faith and courage had got me there.

But only nine months later, I found myself facing an even bigger mountain. Nine months later, I was diagnosed with leukemia, and 18 months after that, I started treatment.

During the years of chronic back pain, every winter, my husband and sons have been going snowboarding at Mt Ruapehu without me. My back injury (&, for awhile, a toddler) prevented me from joining them. Every winter, I’d watched them pack up the car with their gear and head to the snow. Over those years, I’ve felt a range of emotions: relief (I get some “me” time), resentment (I’m left behind), regret (why has my body failed me?), rage (life is very unfair!). And then cancer. Really? Just when I was getting back on my feet, I find myself at rock bottom again!

Now here, just like after back surgery, I faced a choice. Sit at the bottom of the mountain and feel sorry for myself… or find a way up to climb to the top of another mountain.

And last week, I did just that - I found myself skiing (fast) down the tracks at Whakapapa with my boys. It was my first time on skis for 20 years. I went skiing while on active treatment. I went skiing after back surgery. I went skiing with my family and friends. The joy of this mountain top experience cannot be conveyed well in words… here’s a video to celebrate…

I haven’t overcome cancer by skiing, but I have overcome the feeling of being robbed of joy and time with my kids. I went up there to make magic memories with my boys. Cancer cannot take those from me. This is overcoming cancer, one step at a time.

What it takes to get to the top…

Climbing mountains, metaphorical or literal is not easy. And I think the preparation and work is the same for both.

• Fitness - it’s hard to get up a mountain without a high level of physical and mental fitness, which isn’t achieved on the day of the climb, but in all the preparation before hand. Metaphorical mountains also take strength and stamina and we need to be readying ourselves for even when times are good. Practicing gratitude, faith, courage, and perseverance all build resilience and strength and ready us for the mountains we face.

• Packing - what we take in our kit is crucial to our success. On the mountain we need hydration, food, rest, warmth and shelter. In my case climbing Tongariro, I could only lift a light pack; I didn’t have capacity or strength to carry a full three days worth of supplies, but I had family to help share and shoulder the load. This is just as important to me now, as it was then. When overcoming lifes obstacles, we need to look after our bodies, our minds and our spirits, nourishing ourselves with things that will sustain us. Physically that is water & good food. Mentally and spiritually that is taking time for rest and reflection, having supportive, warm and encouraging relationships, safe places to share and find security, and people to help carry the load.

  

• Achievable Goals - I didn’t climb Mt Everest as my first attempt at tramping after surgery. I chose something achievable, so that I would grow in confidence and courage. When we face seemingly insurmountable obstacles in life, the key is not to get overwhelmed by their size and scale, but to focus on the one step we can take today. And then the next day. And the next. Don’t look up to the top of the mountain, that can make you dizzy. Instead, focus on your feet - these are your mode of transport. May you walk in peace.

• Reaching the top - when we get to the top of the mountain, we’re usually sore, exhausted, hungry and hurting. It can take a lot of sweat and blood to grind our way through the relentless uphill climb.

  

  

  But suddenly when we reach the summit, we experience this on top of the world moment, where everything and anything feels possible. We are elated and joyful and all seems magnificent and it is.

  

  

  And in the years to come, it is this moment we remember most. Not the toil and tears, but the feeling of empowerment. This is what sustains and encourages us up the next mountain, and the next. Knowing, that despite all the effort it takes to get there, it is worth it. Most of us don’t spend our days on mountain tops, life is not like that. But we need to treasure those victorious moments as they are the testimony of what we are capable of, all that we can be and all God empowers us to be.

I’m a great believer in the climb. Life is not easy. It never promised to be. But we can make a difference by the choices we make. We can choose to be grateful. We can choose to hold on to hope even in dire circumstances. We can choose to love extravagantly and wholeheartedly despite the risks. We can choose take a step forward, even when it hurts. We can choose courage over fear. Each of these choices is a step that helps us climb further up the mountain.

Courage, Love and Legacy | Points to Ponder

I’m writing this not from a mountain top, but from a perilous position on the edge of eternity. CLL is currently an “incurable” cancer, I have a fast paced version of it, and NZ is well behind on offering modern treatments. A full life ahead can easily look insurmountable and impossible, and it often does. So each morning it’s important I take steps of love and courage and faith and legacy to keep climbing. Last week, that looked like skiing for the first time in 20 years to make memories with my boys. This week, that has looked like advocating for better treatment in NZ in the national media (scary but important). Next week, it’ll probably be another vulnerable video-log to walk alongside others on this journey.

Today, have a think about a mountain you might be facing…

• How are you positioning yourself on your mountain?… are you sitting at the bottom waiting for it to move, or are you choosing to take on the climb?

• What is one choice you can make today to take a step of courage?

• What values are important to you when you go through tough times? How can you practice them today?

• If you’re not facing something difficult in your current season, what choices are you making to prepare yourself - how are you ensuring you are physically, mentally and spiritually fit to overcome something in the future?

Be blessed with Courage, Love and Legacy

Kylie

** there is a lot of political and media discussion about the limited options for treatment in NZ. It is a very real and daily concern for cancer patients and for myself personally. Today is Daffodil Day, supporting the NZ Cancer Society and this Sunday, 1 Sept, is CLL Day worldwide. This year, I have chosen to step into an advocacy role to be a patient voice for better options for us all, so you might see or hear me on TV or newspapers … and if you’ve found me here because of those channels... welcome! I hope you find a regular dose of courage, love and legacy through these blogs.

This month I had my last Obi infusion (cycle 6 out of 12) which means I’m now half way through my treatment trial! From now on, all I have to do is take my daily Venetoclax pills and attend regular appointments with my specialist. There’ll be another CT scan at about Cycle 10 and a bone marrow biopsy after the 12 Cycles, looking for undetectable Minimal Residual Disease (MRD).

Leaving the Cancer Clinic infusion room was filled with mixed emotions for me. It’s become a haven of sorts. A quiet respite in an otherwise full life as a working mum.

In my chair, I’ve been the subject of tender care, attention to my needs and a place focused on keeping me alive. The Obinutuzmab infusions literally dropped my cancer count to almost nothing in my first few days of treatment. Along with my trial nurse, they have been my ally and friend. In some ways they have come to represent safety, security, life.

I know I still have another 6 months of Venetoclax ahead of me, and that too will keep those cancer cells right down… but I can’t help but wonder, “what then”? The complexity with CLL, is right now there is no medical cure. There are amazing treatments that buy time, sometimes a good many years, but inevitably, it is expected that at some stage the cancer will return, again and again until it gets the better of me (sorry, not trying to be depressing, just pragmatic). And I’ve found it difficult to celebrate my results, my response, while this shadow lingers.

THAT question

People often ask “how is treatment going?” and it’s a well meaning question, born out of concern and care but, recently, I’ve found myself rapidly trying to deflect and defer away from their focus on me. I’ve become adept at maneuvering the conversation around to them and their lives. Deftly dodging and diving around the issue. That question seems to suck the life out of me.

But when I’m at home alone, I ponder “why?” Why do I wince and withdraw every time that question comes up?

Mid-term Results

So firstly, because it is the question on everyone’s lips, let me answer it; let me share my half-way results with you, and then I’ll try and unpack my rumination on my reluctance to talk about them…

In simple terms, there are a number of ways we will know if the treatment has been successful…

• My white blood cell and lymphocyte count reduce to normal levels

• The trial has identified and is monitoring 6 target lymph nodes to see if they reduce back to normal size

• Other non-target organs and nodes reduce to normal size

• I achieve an undetectable level of Minimal Residual Disease in my bone marrow

My Specialists Reassurance

Today, as my specialist ran me through my results, he came across genuinely pleased, reassuring and positive… saying that by all accounts, my body as responded really well to the treatment and, from the blood tests and physical examination, he’d consider me close to achieving a “complete clinical response.” Which is awesome and uplifting news!

Let’s take a look at what’s led him to that conclusion…

Cancer Cells in My Blood

Very early on in the treatment my WBC and Lymphocyte counts reduced to normal and often below normal levels of cells. It was a rapid reduction of lymphocytes - from pre-trial high of 330.4 to 223.6 after the first day and then, only a week later, down to 4.4! Totally remarkable and exhilarating and very much a highlight of the treatment journey so far.

Six target lymph nodes

At my second CT scan the 6 target lymph nodes were measured against my baseline sizes. Over the first four months they have reduced by 79.9% and all but one has reduced to within the normal size range (>15mm). The one stubborn node is lingering just above the acceptable cut off at 17mm. Only being 2mm above the nominal cut off, it could mean any number of things, from just being a slightly bigger node, to it fighting something the day of the CT scan, to (the unlikely event of) residual cancer cells hiding… and based on the positivity of my specialist, it’s not something to worry about.

Other non-target organs

The result I’ve been most amazed by is my spleen. It got very enlarged prior to treatment… as you can see in the photo below… and has now reduced back down to normal. Seeing the photos on my specialists screen really brought home just how unwell my insides were when I started treatment - I wasn’t feeling that sick or overcome by cancer, I could not see my spleen, although it was palatable on examination but this photo demonstrates just how pervasive the cancer was!

MRD in Bone Marrow

This test will happen further down the track, so in the meantime please pray for my treatment to cause deep, deep undetectable MRD (<10⁻⁶) … “as several studies have shown the close correlation of End of Treatment MRD status with Progression Free Surival (PFS) and Overall Survival (OS).^5,13-17 The depth of remission should therefore be proportional to the time to disease relapse.^2,1” In simple terms, if measurable levels of cancer cells are still detected, remission time will likely be short; if it is really hard to find evidence of cancer cells, a deeply undetectable MRD, my remission time will hopefully be for many years. Undetectable MRD (uMRD) is currently defined as the presence of less than 1 CLL cell in 10,000 leukocytes (<10⁻⁴) and it can get as low as (<10⁻⁶). Anything between (<10⁻²-<10⁻⁴) is considered an intermediate response and anything higher than (<10⁻²) is not optimal for long term results/remission.

My Reluctance

Phew, all good news, but so complicated right? On typing all that out, I realise, a part of my reluctance to talk results is simply because it all seems so complex and each aspect of the results comes with so many implications, individually and collectively. Leukemia is, unfortunately, not a tumor they can identify and target with chemo, radiation or surgery. Which is what makes CLL so difficult to find a cure for. And that makes it difficult for me to try and explain it simply. To be honest, I find all the intricacies of it overwhelm me and are not the response people are looking for when they ask that question.

The second reason I find it so hard, is my journey has been anything but textbook (if there even is one!). I’m in a younger demographic (between 5-10% are diagnosed with CLL under 50), I was told CLL was a slow to develop cancer and I didn’t have any of the “high risk” markers (TPH53, IGHV, 17pDel etc), yet in 18months mine sky-rocketed. Without any clear reason or explanation, I found myself already having my first treatment, while others with my genetic markers can go without for 10-20yrs.

Here’s an example of how complex the data is for how long someone can usually live without treatment (from their diagnosis) based on some of the known genetic markers…

(FYI, I’m in the Mutated IGHV group and, according to statistics, could have enjoyed 24yrs before my first treatment. I got 18 months.)

And then here’s some data around the progression free survival time (remission) after Venetoclax and Obinutuzmab treatment…

So technically I could look forward to 7 years ahead with no cancer…but once bitten, twice shy right?

The Bite

And here’s the deeper reality of my reluctance to share and celebrate my results. I’m scared. For 18 months, every blood test has been a shock to my system. I’ve come to live seeing results as a constant and real threat to my existence.

None of my trajectory matches anything I can find in research papers and statistics. I do find the odd person online who has shared a similar journey, but not many. I don’t feel confident in my chances of a lengthy remission, not until I am still living cancer-free in 2030 and there’s a lot of blood tests between now and then. I need my remissions to be long and lasting because I have three kids to raise, but what if they’re not? There is such a significantly monumental unknown to my days ahead and I have no idea what my results mean. My “safe” genetic markers meant nothing in the unusual progression of my illness, so I don’t have much faith that my results alone will predict my length of life from today forwards. Gloomy sound huh? I’m sorry, I think I’m building to something positive… (but while we sit here, if this resonates, this uncomfortable conversation about results and what they really mean, I’ve shared this because I want you to know you are not alone in the wrestling.)

Cancer-free conversations

So my blood tests and CT scans results on the surface may seem positive at this stage in the treatment journey, but my inability to have a full-blown party comes out of a deeper daily awareness that I am mortal (as we all are), and there is no straightforward way, no certainty I can give, no nicely packaged response to that question “how is your treatment going?”

So what can we do about this? My gut feeling is, let’s start by changing up the question. Instead of always asking “how’s treatment going?” or “what’s happening with your treatment?”, what if we asked other questions to people going through cancer or give them permission to not talk about their cancer at all. I have a few good friends who have communicated to me that they know I do not want cancer to define me, that they love and want to hear about who I am away from my silent shadow, that have given me permission not to answer that question and talk about other things that are important to me. And I have lots of other things I’d love to talk about! I don’t know how long I’ve got on this planet, but while I’m here I’m still planning on extracting everything out of my time.

I love to focus on plans and preparations and activities and adventures and family celebrations and magic moments and making memories. Talking about these things are what quiet down the search for a reassurance that I’ll never find on a medical result print out.

I went out to dinner recently with a friend I haven’t seen for ages, and as we sat down, she thoughtfully prefaced our time together with, “I care about you and am happy to talk about your cancer journey, but if you don’t want to, I can be that fun friend where we talk about everything but…” Wow, did that instantly relieve me of the pressure that was building and provide me with permission to talk about so much else that is important to me. I felt very seen and known and loved in that moment. I was very grateful.

The elephant was named, and then sent to bed with a gentle hug.

Courage, Love and Legacy: Points to Ponder

• If you’re a cancer patient and, like me, find times when you struggle with the questions of how life with cancer, treatment or remission are going, and agonize over the a constant focus on your condition, your health, your cancer, I’d encourage you to find a gentle way of letting people know you’d rather carry the conversation somewhere else. I’ve started saying “thanks for asking, would you mind if we park that part of my life and talk about the rest of it today?”. I know our friends and family have the best intentions, and sometimes we do want to share and give them an update… and other times we don’t. Because they don’t know, it’s a good idea for us to have the courage to communicate our needs clearly, so they can support us well. What could you say when you need space from your condition? What might you say when you really do need someone to share your heart with?

• If you’re a friend, family or part of a community of people supporting someone with cancer, I’d gently encourage you to consider your approach when catching up. It’s important you do show you care about their cancer AND it’s important you care about the other aspects of their lives too. How can you mix it up a bit, giving them permission to talk or not about what’s going on for them in that realm? I know it’s a delicate balance between ignoring a really significant part of their lives (by never asking) or making it the only significant feature of their lives (by asking all the time)… Have a think about ways you can compassionately navigate these conversations with your loved ones…

Here’s to us all growing in courage, love and legacy

Kylie

Three weeks to treatment: IronMan

10 days after signing up for the Celestial Trial, our family packed our bags and headed to Tāupo to support my 70yr old uncle to compete in the full Iron-Man. For those unfamiliar with this grueling event, it consists of a 4km swim in a lake, a 180km bike ride followed by a full marathon (42km run). This is no small undertaking when you are young and fit. To attempt your first one at 70yrs is beyond remarkable! And what an inspiration he was - an amazing demonstration of resilience and pushing through the pain.

For each leg of the race, our family would find a spot to cheer him on and, while we waited, we would encourage all the other athletes passing by. This is one of the highlights of being an IronMan supporter. Witnessing the determination of such an incredible mix of participants. Most of the field are not professional athletes. For each of them, there is something personal and profoundly rewarding about this achievement that inspires them into hour upon hour of hard physical effort and endurance. They start at 8am, many finish well into the late night hours, taking over 12 hours to complete the course. This takes more than physical fitness, it takes steadfast willpower. And as the sun set, we sat out under the stars, still supporting the staggering survivors as they trudged through the night. We’d give each passing person a “superpower high five” and see their spirits lift as well as their stride.

For the last leg of the run, my uncle was flanked by two of my sons and my mum, while we cheered out the car window. The sheer exhilaration of such a monumental achievement carried him across the finish line, as the commentator’s voice boomed “You. Are. An IronMan!” That day, my boys witnessed how, with inner strength and pure resolve, a person can persevere and overcome even the most difficult of trials.

That was Saturday. Monday, I drove myself in for a CT and heart scan. Two tests in preparation for my own trial. Inspired by my uncle, I was undaunted by this next step on a journey which I knew would also require inner strength, resolve and perseverance.

Two weeks to treatment: Top Schools

The following weekend we were off to one of the best events on the school calendar - Top Schools - a medley of energetic, crazy and hilarious team activities. Here the kids undertake all manner of madness, mostly involving buckets: water slides holding leaky buckets, stretching thin to grab a floating ball out of a bucket, balancing a bucket full of water on a pole above your head, sponge bob square pants sponge throw into a bucket… Every parent supporter secretly wishes there was an adult version of the competition, as our inner child enviously cheers from the sidelines.

An event like this allows no time for dwelling on life’s worries. It is fully immersive and laughter generating. It encourages us all to embrace the freedom and fun of youth. Winning is hardly the objective here (although there is a rather large trophy for the Top School)… this event is designed end to end to be about fun in all it’s fullness.

As the water or sand, is squeezed, splashed, dripped, or drained from whatever vessel the activity determines, the goal is usually the same. Work as a team to get as much of it into the container (mostly buckets) at the end. Don’t spill it, leak it or let it slip by. Retain or extract as much as you can. Another good takeaway for our family as the countdown continued. There is so much good in life. Let’s work to retain and extract all that is good. Fill up our buckets with a life lived fully.

One week to treatment: WOMAD

And then, WOMAD, World of Music and Dance, in Taranaki. Our contained way of “traveling around the world”, experiencing the talents and sounds of different ethnicities and cultures, celebrating life and family. A full three days of dancing, grooving, laughing and living. As each day tapped out another beat towards treatment, we appreciated the vibrant and energizing rhythms playing, with the volume turned up.

The absolute highlight from this festival for me was when, puffed out from dancing (high white blood cell count was taking it’s toll on my oxygen capacity), I sat down on the grassy hillside while all my boys (husband included) grooved to an outrageously energetic Bosnian scar reggae band, dressed in bright yellow football gear (I know, the mind boggles). As they “la-la-la-d” their way through the hilariously interactive performance, a man behind me lent forward and commended me on my children’s dancing. He was impressed that, in this day of the surely “screen-ager”, my tween and teen were unashamedly rocking out with their parents. Very proud mum moment, just saying.

And this is it, right? This is what we live for. We yearn for that feeling of wild abandoned wonder-filled, exhilarating freedom. The freedom to dance. The freedom to connect. The freedom to live without walls. The freedom to move authentically. We have this freedom when we are children. The man did not marvel at my 6yr old dancing wildly before him, but he marveled at youth on the verge of adulthood still being young and free. Because usually something, someday robs us of that. And then we spend most of our adult lives seeking it, just a taste, if only for a moment.

But why let this childlike freedom slip out of our grasp in the first place? I’m sure this uninhibited freedom is what Jesus saw when he said it was those who became like little children who would enter His Kingdom. We’ve determined to always be a family that dance together, no matter what circumstances, distractions or difficulties we face. And so we danced through the day and through the night, towards the dawn of a new season…

Now, let the games begin…

In the countdown to treatment, these weekends of fun-filled activity deposited hope, health and happiness into our buckets. The very real strain of impending cancer treatment on our family was made more than “just manageable” because we were thriving in other areas. Instead of a tank sucked empty by growing anxiety, our reservoir was full and we felt ready for the games to begin…

Courage, Love and Legacy | Points to Ponder

When faced with a massive marathon, we each to have to find ways to draw deep to sustain us on the journey ahead. For us, we were thankful for a calendar full of fun activities to fill our bucket. But like the leaky buckets at Top Schools, what we pour in, also leaks out into life around us, as we go about our days. It’s important to keep finding personal freedom, fulfillment and fun moments, even in the difficulties, in order to keep our reservoirs full.

• What does filling your reservoir look like to you?

• How full are you feeling today?

• Is there something you have planned or could plan to do to top it up this month?

With Courage, Love & Legacy

Kylie

Our boys are resilient, hopeful and positive kids. Even so, as the day for treatment crept up on us, I could see and feel it’s impacts on our family.

I imagine that before any cancer treatment there will always be a growing sense of anxiety and concern, there is so much unknown; so much at stake. Going on a trial didn’t help matters, because there was “russian roulette” day, where my future drugs would be determined by a computer’s randomised selection. So it wasn’t a usual run-up to treatment: a specialist consult, a choice, a decision, action. There was this awkward in-between, knowing but not knowing, a choice to be on a trial, but the rest of the decisions out of our control, a time-slowed down, time ticking interim. And also the chance to chat, share and support.

As I navigated all the pre-trial requirements: blood tests, CT scans, heart scans, paperwork etc, I kind of assumed life was just going on as normal for the kids. We’d grown used to my CLL diagnosis, and otherwise, I’d been both healthy and an invested, caring mother. So all was well right? … Kind of…

One day, my middle son, Judah, came home and mentioned he’d asked a couple of his friends to be his support crew when I started treatment. I was speechless. I was impressed by his emotional maturity, his willingness to be vulnerable with his mates and his proactive approach to what was coming. I was also confronted by the fact that, in all the demands of pre-trial life, I was unintentionally neglecting a vital element of preparation: being fully present with my kids emotional and spiritual well-being as they too processed the impacts of my treatment.

In all fairness, I was putting elements together for their care: play dates, family and friends around, meal and food provision, sports logistics etc … they were firmly on my mind and heart. Yet I had missed how all this talk of preparations was effecting our environment and their inner thought life. Judah’s sweet and off-handed remark, brought that aspect into focus, with plenty of time to spare, thank goodness.

Pre-warned is pre-armed and I was now aware of one of the most important aspects of the days and weeks ahead. Ensuring this was not a time of fear and absence, but of love and connection.

With that in mind, over the next wee while, I’m going to do a little series specifically sharing some of my most vivid moments and learning from those few weeks… all about navigating cancer with kids… for those of you without cancer or without kids, you’ll still find there will be broader life lessons to takeaway that are relevant to anyone at anytime. And the points to ponder will be there, inviting you to take a moment to reflect and apply these to your own life.

Part 1: Limit the Chatter

I was keenly aware of how much talk time the trial was taking up in my adult life and relationships. With an amazing community of supportive people, there were lots of asks and updates to communicate. There were lots of people calling for check-ins.

And in the end, many of those calls I didn’t answer. On purpose. Not because I’m unappreciative, but because I needed to limit the chatter and it’s impact on my kids.

Every time I sat on the phone sharing my story, was a moment I was unavailable to be part of their story. And every time I answered people’s well meaning questions it was a story on repeat for my boys… trial arms, drug risks, emotions, logistical juggles, fears, faith… we were all saturating in it, and that wasn’t helping them or me. As much as I found it hard to ignore phone calls, I’m not sorry I did. Although I didn’t have a choice of my treatment drugs, I did have choice what to immerse in.

Putting up boundaries for the sake of your children is an important thing to do. I don’t find boundaries that easy to establish at the best of times. Saying no, turning away from a phone call from a loved family member, or a close friend, all the well-meaning people doesn’t feel nice. Saying “no” is hard.

Sometimes we need a bigger YES to help us with our “no”.

I was saying YES to my children’s emotional health and well-being. They are important.

I was saying YES to having enough capacity for my family first.

I was saying YES to cancer free airwaves.

I was saying YES to holding onto a piece of normality, fun and connection.

Knowing what I was saying “yes” to me, gave me permission and equipped me to say “no”.

Don’t limit the love

During difficult times, limiting the surrounding chatter may be important for our kids. But let’s not limit the love that we need to receive as well.

I knew I’d be in the position to pickup the phone again, and leave my kids playing nearby. In the meantime, I was intentional about letting people know how they could communicate with me, offering and inviting people to use other channels. I’d share updates on this blog, on messenger groups, a prayer and support email and I also established a urgent Plan B whatsapp group in case something went sideways in those first few days of treatment.

When someone reached out, I vulnerably responded that I didn’t have much capacity for calls and appreciated hearing from them via messages. Friends and family were incredibly understanding. Their best intentions prompted them to call. My best intentions prompted me to protect my kids. When we anticipate people are acting with their best intentions we can be understanding, kind and accepting towards each other aye? Love keeps flowing.

And because people heard and understood my heart, I have been nourished, encouraged, held and sustained by all the loving messages that were sent to me before and during the first weeks of treatment. For this I am incredibly grateful.

Courage, Love and Legacy | Points to Ponder

Choosing to limit chatter and let in love are relevant takeaways for anyone whether or not you have cancer or children. Our words have power, what we give voice and time to creates an environment around us. Our world far too often focuses on negative events and news that incite anxiety and deplete positivity. As much as it can be good to stay informed, being sensitive to our capacity for information that weighs our minds and hearts down is important. And prioritising space for things that lift us up, nourish and enrich us is equally valuable.

Consider in your own life…

• What “chatter” might you need to turn the volume down on in order to support you and your families well-being?

• What is a something you’re finding difficult to say “no” to? And how can you re-frame the “no” into what you are instead wanting to say “yes” to?

• Where might you be assuming someone is acting out of anything but good intention toward you? … Take time to consider their perspective and see how an action that is upsetting you might be done with their best intentions. Keep love flowing today.

• What would it look like for you invite love, support, care and positivity into your life where you most need it?

Vulnerable

/ˈvʌln(ə)rəbl/

adjective: vulnerable

1. exposed to the possibility of being attacked or harmed, either physically or emotionally. "We were in a vulnerable position"

   
   Similar words: in danger, in peril, in jeopardy

Being vulnerable doesn’t sound like an inviting position to be in, does it? And, it would be an accurate reflection of my physical condition in the first months of treatment. The treatment does a great job at assaulting the rouge cancerous white blood cells and getting rid of them, but, in the process, it also hits the helpful ones pretty hard too. I’ve regularly been considered “clinically neutropenic”, which means my first-line defenders against pathogens are depleted to dangerous levels. My body is exposed to the possibility of harm. Which sounds a little intimidating doesn’t it?

And I think vulnerability is intimidating for most of us.

Yet there is something I value about vulnerability.

In-fact, neutropenia is a well-known side effect of cancer treatments. If I didn’t take the medication that was causing this condition, the cancer cells would continue to have free reign in my body, most likely leading to my eventual demise. So, I open myself to this vulnerability. It’s a risk I’m willing to take to get healed.

Getting Metaphorical

For me, being neutropenic resonates at a much deeper level than just a form of physical vulnerability. I invite you to see it as a metaphor for personal vulnerability - emotional, relational, spiritual.

Now, I’m no Brēne Brown, who has brought the idea of vulnerability to the fore in recent years, but let me share a little from my personal perspective and experience…

Just as with cancer and neutropenia, where it’s intimidating to know we’re in a weak and exposed state, with little resistance or backup, we can often be intimidated by our inner journey… our challenges, our weaknesses, our mistakes, our insecurities, our pain, hurts, or trauma. There is a degree of uncertainty and risk attached to opening up these hidden aspects of our lives to someone else. We often harbor a fear of being hurt, judged, exposed, misunderstood, or rejected. We might not want to burden another person with our problems. We might wonder if the love or trust in the relationship is strong enough for the truth. Shame of our weakness, fear of our vulnerability hold us captive.

Shame and fear are like cancer. They grow hidden in the depths of our being. Often unseen and undiagnosed, free to propagate and multiply. Their effects are felt everywhere, but the origin of the disease can remain a mystery. And they like it this way. Shame and fear are insidious by nature. They want to own and restrict our sense of value, our relationships, our vision for our lives, and our daily choices.

And the only way to rid ourselves of them, the only way to heal, is to step into the risky place of vulnerability. The very thing we are intimidated by, the very thing we fear, is the antidote to fear and shame.

And just like the treatment journey I’m on, it’s only when we choose to get vulnerable, to open the door to our hearts, that hope and healing are infused into us. Given time and regular doses, this infusion penetrates deep into our hearts and spirits and rids us of fear and shame. And as we journey in this space of openness with trusted loved ones, we find freedom and courage. Our weaknesses and hurts are no longer shameful things to hide. We come to understand that from weakness, strength grows.

A personal epiphany: a habit of hiding

While reflecting on my physical state of vulnerability over the last months, I had an epiphany… let me share a little about it with you.

Over my early life, I often lived a dual existence. I presented a facade of a responsible, well-mannered, intelligent, capable, and positive young woman. Beneath the surface, originating from a childhood wounding, there was an infestation of pain, shame, and bad choices growing. I lived with the loud lie that lorded over me “your weaknesses are shameful, don’t let anyone see how awful you really are; no one could handle your mess!” So to prevent people from being appalled by my inner mess, I developed a habit of hiding. This resulted in a downward spiral, a deep dark pit that I didn’t know my way out of. An internal “cancer” that was depleting me of everything good.

Thankfully, a hand reached into that pit and pulled me out (& that’s a story of its own). But I had a lot of healing to do. Which meant getting vulnerable. Coming out of hiding. Exposing the things that were hurting me and others to the Light.

As I made this difficult journey, one moment stands out as my moment of greatest vulnerability and greatest freedom. This moment changed everything.

One of my self-destructive habits was being a closet smoker and I was exceptionally talented at hiding it. I had developed a clever set of protocols so that no one would suspect the truth. On my journey out of the pit, I told a few trusted people about this hidden shame. Although they knew about it, but I would still never smoke in front of them. That was too raw, too vulnerable, too much exposure.

Until, one day, I distinctly heard God ask me to actually smoke in front of them; at a massive church conference no less! He had my freedom at heart, but I was terrified. All I could see was the crushing risk of public and personal shame! With hands shaking, tears rolling down my cheeks, and my shame wanting to vomit from my belly, I lit up and inhaled. My loving friends encircled me, extending the grace I needed in that moment. And with each exhale, fear and shame were expelled. I was still loved. I was still accepted. I was not being judged lacking. In that moment the lie that had been strangling me was uncovered and removed. Within two weeks, I had quit smoking. That was over 15 years ago.

This was a pivotal point in my life. The hiding was over. Vulnerability was welcomed in. These days, I choose to be an open book. I know have nothing to fear. Because I believe in and have experienced both the deadly power of shame and the liberating power of being vulnerable.

I am Weak, Yet I am Strong

I’ve recently finished reading a remarkable book called “I am Weak, I am Strong” by Jay Hewitt. Jay is diagnosed with an incurable brain cancer, who after open brain surgery (while awake!), and while undergoing chemo and radiation treatment, trains for and completes an Iron Man to demonstrate his faith to his young daughter.

As he concludes an incredible and inspiring undertaking, his reflections resonate with mine. Jay discovered that his greatest fears were weakness and vulnerability, and it is here, even after achieving an Iron Man, he most wants to grow. He has embraced the truth that God can transform weakness to strength. His words “When I am weak, then I am strong” resonate with my story in so many ways, past and present…

Out and about, people exclaim at how well I look. They are surprised. They know I am having cancer treatment. The treatment is going amazingly well. Very few side effects (bar the neutropenia); all the important blood counts back to normal. Lots and lots to be thankful for.

Yet right now, I’m not feeling it. I feel worried, sad and depleted. I’m tired and sometime exhausted. My capacity feels stretched and my mind muddled. Daily at the moment. There is a dark cloud hanging over me which I can’t seem to shake. Mentally, emotionally, spiritually I am weak. And this weakness is easily hidden if I choose. People can’t see it, it’s an internal struggle, unobservable to the outside eye.

So I sit with the choice we all sit with in our weakest moments. Hide the pain and struggle, put on a facade of togetherness? Or get vulnerable and be honest about my what’s going on? I am weak, yet I know, with God’s grace, this will be eventually be a testimony of strength too. I’m just not there yet. So what do I do in the meantime?

Shame and fear would tell me to hide my weakness, but this is my metaphorical cancer speaking. As I’ve just shared, I was a habitual hider and don’t want to get caught in that trap again.

I’ve realised that, just like when I’m neutropenic, I need outside intervention to stimulate strength. To remedy the neutropenia I’ve been having regular injections of a substance called pegfilgrastim that supports my immune system to build up its defences. In the same way, while I am weak, I need help from others, to stimulate strength in my head, my heart, my hope. I can’t do it alone.

While I am weak, being vulnerable is my strength.

Falling Leaves

So I take small steps to combat fear and shame again securing a stronghold. I acknowledge my current struggle. First to myself (which is often the hardest step to take). Then to God. To my husband. To a few trusted friends.

When I fell flat recently with absolutely nothing but the cry on my lips “Help me”, God led me to picture and a poem prayer … On desperate, cold autumn walk along the edges of a dark deep lake, my eyes were drawn to the golden colours of falling leaves and my fingers found a page with these words…

“God of the seasons,
you make even fallen leaves beautiful,
and bare autumn trees a work to behold.
May these same signs within me
now be monuments of holy beauty
singing grateful songs in darker times,
welcoming the springs new light.
- Stahan Coleman, Prayer Vol. 02

We all have seasons of falling leaves (mine is providentially synchronising with the season around me). Where we are fragile. We are frail. We fall. Do we give ourselves permission to feel that fully? To share our bright and fading colours as we fall? The blazing red, sun-scorched yellow, broken brown. In autumn, these trees become bright beacons of vulnerability as they shed their covering. And in this shedding, they make space for new life to bloom. First their leaves must fall, then, bare and exposed, they stand through the cold winter months, strength building inside, until those beautiful buds burst as the sun warms.

This is what it is to walk in vulnerability. To shed our covering. To stand exposed. And trusting that spring will come.

I am weak, yet I am strong. I know from experience that when I have chosen to be vulnerable, asked for and accepted help, exposed my weakness and shared my struggles with trusted others, love and support has flooded my way. It has strengthened me and carried me through otherwise tough times.

This cancer is a weakness. Yet I am strong. So today I choose to be vulnerable with you too. Because this blog is just one example of where my weakness is transformed to strength. And, for me, that makes it worth being vulnerable.

Courage, Love and Legacy | Points to Ponder

Of course this post has been intimidating for me to write and share because I’m being very vulnerable with you all. So just to be clear, vulnerability doesn’t always look like sharing your intimate internal epiphany’s and struggles with a wide bunch of readers (this is my personal choice, because I try to authentically live out my values, because I believe that by sharing my struggles you may find freedom to share yours and because in sharing of vulnerable stories we can connect most deeply).

However, being vulnerable does look like sharing heart to heart with those you know and trust. And the circle of who you trust can expand as you get into the practice of vulnerability and finding the freedom it offers.

Reflecting on what I’ve shared and what’s resonated today, take some time to ponder…

• Who would you identify as loving people in your life that you are or could be vulnerable with?

• How much vulnerability do you invite/permit in your relationships? What would it take for you to grow in vulnerability? Identify a couple of areas you could grow and people you could grow with. Be courageous and let them know you’d like to practice with them.

• If you have trouble with vulnerability, or a habit of hiding weakness, take time to sit in the discomfort of your weaknesses, fears and shame.

  • Imagine sharing one of them with someone you trust.

  • What negative feelings and beliefs come up for you? Empathically allow yourself to feel, identify and name those emotions. To hear those voices. Begin to understand what is standing in your way.

  • Probe your thoughts, feelings and beliefs. Where do they come from? How deep do they go? Allow yourself to journey with yourself to understand root causes.

  • Then challenge them. Play out sharing something you’re struggling with but with a different outcome. A positive one. Invite in grace, hope and healing. Allow yourself to be loved more fully. Allow yourself to be vulnerable.

(If this post has brought up some deep areas of pain for you that you don’t feel equipped to deal with yourself, please do seek a professional therapist who can support you to heal.)

Add to this periods when we are under the influence of handfuls of drugs, body and mind altering medications as we attempt to ward off the threat of our inevitable demise …

Over the first few weeks of treatment, I considered my own response, my moods, my emotions, my motivations and how the fusion of both internal and external influences can create both light and fire. A maximiser on steroids can be both wonderful and dangerous!

External Influences

For my first three infusions I was given a bunch pre-meds (panadol, anti-histamines & steroids) as a precaution and to protect me from the risk of a reaction to the Obinutuzumab infusion.

And discovered just how powerful steroids are.

I had nights of limited or no sleep. My mind fully stimulated by and engaged in all manner of deep and perceptive thought. I was energised. I was positive. I was high.

And then I wasn’t. Two days after the injection, I would crash. My mind became foggy, slow and unfocused. I was depleted. Lethargic. Low.

This is the roller-coaster of treatment. It felt like the steroids turned all my systems on in order to protect me from treatment risks. Once the threat reduced, all my systems were turned off. Utterly exhausted from the effort of a constantly alert state.

In some ways I loved the steroids. I discovered that, in that enhanced performance state, my ideas and writing thrived. Light.

In most ways, I hated the steroids. I didn’t enjoy the emotional lows, being subject to moods outside my own will, my lack of capacity and energy for my family. Fire.

I sought balance.

Internal Influences

In my nights of clarity, one thing became clear to me. It wasn’t just the effect of introduced drugs that were influencing how I navigated the days after the infusions.

Steroids certainly played a part. They amplified what already existed. They didn’t forge something from nothing, instead, they enhanced my performance.

So then what were they enhancing?

They enhanced who I am. The enhanced my strengths.

A couple of years ago, I began a journey of becoming a Strengths Coach, by learning about and growing in my own Strengths.

For those who haven’t heard of “Strengths” - known as “Clifton Strengths”, this psychometric tool identifies 34 areas of talent, skill and capability that a person can draw on to succeed in life. We don’t use all 34, instead we become familiar and adept at using between 10 -12 of these strengths and talents, with the first five actively utilised daily life. These strengths motivate and drive us, influence our thinking and become the lens through which we perceive the world.

My top five strengths are:
Strategic - an ability to perceive direction and alternatives paths, adjusting confidently
Achiever - the desire to get things done, to be productive, task-orientated
Activator - a talent to ignite action, get things started, inspire and motivate movement
Maximiser - a desire to shape “good” into “great”, to squeeze out all potential
Belief - a solid foundation of altruistic values that influence every thought and action

(These strengths don’t operate in isolation. When fused with other strengths, they could well express themselves differently.)

Just like steroids, I have a love and loath relationship with my strengths.

I love them because, when they’re in balance, they provide me with a clear, meaningful life direction and equip and empower me to move confidently toward that vision. Light.

I loathe them because, when they’re out of balance, they burden me with an unrelenting sense of obligation, of striving beyond my capacity and are a recipe for burn out (which I’ve experienced a number of times in my life). Fire.

I still seek balance.

Unique and Personal Motivations

Mostly though, I value my strengths and it is these that have uniquely influenced my cancer journey… in fact they’re the reason this blog started…

Belief - inspired me that my cancer journey was not for me alone, but an opportunity to give a gift to others. The gift of sitting on the edge of eternity together and sharing intimately.

Maximiser - and, for me, it wasn’t enough for that gift and connection to be casual conversations with a few close confidants. I needed to squeeze all the potential out of this otherwise crap situation.

Strategic - my desire for leaving life with a legacy of love led me to envision an alternative path - transforming my CLL diagnosis into this CLL blog “Courage, Love and Legacy.”

Activator - said “Let’s go” - my writing started within a month of my diagnosis. I didn’t wait for some distant time in the future after I’d learned to live with cancer. I kicked off immediately. Activators do this. There is no time like right now!

Achiever - I was then able to efficiently work through the tasks of finding a website host, designing the original platform, put together a database of initial friends and family… the list and ticking it off, as with any achiever, goes on and on and on …..

I am unique. They suggest 1 in 33 million share the exact same 34 strength’s profile. This means that you would most likely not approach having cancer the same way I have.

You will have your own personal and unique way of approaching “danger zones” which will be motivated by your own combination of strengths. You may choose to be completely private, you may like to immerse in a good book or journal, you may hunt out physical challenges that make you feel alive, find power on adventures, you may really struggle and find yourself awash in the current, you may step out with utter faith, you might keep calm and carry on.

Strengths on Steroids

What I know to be true, is that strengths can operate on full power mode, with or without an actual steroid injection. Strengths are an internal force that, unchecked, drive and determine our motivations and actions. They are powerful. They can also be our kryptonite.

Being able to identify, name and harness our strengths is important.

My “maximiser” loved the effects of the steroids I was being given. It enhanced my creative abilities. It had the power to lift my writing from good to great. Like a competitive coach it suggested I embrace the steroid high, stay up all night and write freely.

My “achiever” wrestled with the effects of the steroids. It oscillated between wanting the opportunity to be highly productive during the nighttime high and feeling frustrated by being a complete write-off when I crashed.

Like a wise mentor, my “belief” knew my connection with my family was suffering as my body had to constantly adjust to the external stimuli. And had decided enough was enough.

I could feel the tensions as each strength vied for my attention and action. In a confusing, muddled and tired time, it helped that I was cognitively aware of my internal influences and could recognise their voices. This enabled me to both harness (hold back) that which would do me harm, while also harnessing (grab hold of) that which would help me. I was not being tossed about by impulse. I had control of the reigns and knew what I needed to do.

After the first two infusions, I asked the nurse for sleeping pills which allowed me to sleep for the nights following. This gave me greater capacity, clarity and connection in my day time hours. At the start of my second treatment cycle (one month in), I asked for a review of medication, specifically for the steroids to be removed from my cocktail. They were and I have experienced a normal energy week following the infusion.

Balance.

Courage, Love and Legacy | Points to Ponder

Have you taken time to explore and understand what drives, motivates, influences your thinking and decisions? Going through difficult times is often hard enough, and we can be our own worst enemy or our own best friend depending on how well we know and harness our inner influences.

• If you’re in a pretty comfortable season right now, don’t take it for granted; make space to learn about yourself, so that when a challenge comes, you’re equipped with understanding your own unique response patterns.

• If you’re facing a challenge, take time out to consider what directions your heart and mind is pulling you in. Are there repeating patterns you’re aware of? Are they helping or hindering you right now?

• If you’d like to discover your own strengths - I do online and in person coaching… so feel free to flick me an email/message. When I first received my strength profile, I laughed out loud and thought “oh right, this is totally explains the way that I am!” Light. Fire.

• If you already know your strengths, I’d love for you to share a comment about how they help or hinder you in challenging times and how you’ve learnt to harness them.

Leave a comment

It’s our 19th wedding anniversary and also clinical trial day one of cycle two. The night before my infusion Anton and I stayed across the road from the hospital, serenaded by sirens, in a motel room paid for by the clinical trial.

At 8am I wandered across the road with a handbag full of medication and had the first of the three blood tests I’d have in the next 24hrs. I removed my top and lie exposed as sticky dots are placed all over my body for an ECG, then leaning over the consultation table, discussed my life and my future with my specialist. I walk around holding hands with my infusion line as chemicals drip in. My vital signs are periodically monitored by my nurse. She checks my pulse, blood pressure, temperature and oxygenation…. CUT

Doesn’t read like a romance novel does it? It could though. If we changed a few details, a few words here and there. What if the motel was on a Pacific island rather than opposite a hospital? Serenaded by ocean waves rather than sirens? What if it was Anton opposite me at an intimate table for two as we discuss life and future? What if I carried flowers and had three glasses of wine over the day instead of medication and blood tests? You get the point.

Happy anniversary hun. What a romantic celebration.

But really it’s all a matter of perspective. How we choose to embrace it. Mourn what it’s not, or discover what it could be.

And on Tuesday, thanks to other cancer patients, we did have a delightful day, discovering much about life and love.

Because even though that was exactly how the day began, it didn’t end that way. Let’s get back into it…

…After my nurse is assured I’m settling into the treatment well, I reach into my handbag and pull out large box of Roses chocolates. Smiling knowingly at Anton, I open them and offer her one. “It’s our wedding anniversary, celebrate with us.” As she opens the crinkly colorful wrapping, I explain to her that we’d like to go around the cancer clinic and share the chocolates with the other patients there. She knows this is likely to tire me out but can see that this simple gesture will be a delightful distraction to others, so graciously humors our initiative.

As we slowly make our way around the room, taking time to savour a moment with each person, connecting with the hearts of people who are attached, like me, to a tube feeding them with chemicals, we discover the infusing power of love and family.

Like giddy, naughty teens, we were late back to my easy-boy, and as my nurse reaches for her blood pressure monitor, I sink into the depths of it’s comforting cushioning. An hour passes, the infusion rate increases again, I can feel the pull of chemical induced sleep. I reach over and hold my husbands hand. We are here, we are present in our reality, and yet are both filled with an intimate joy that comes from experiencing life on the edge of eternity.

Pretty good ending right? Might not make a romantic novel, but it certainly invites us to look for opportunities to carry love and reach out to others with tenderness.

It’s our wedding anniversary, come, celebrate with us.

As I have observed my fellow the cancer clinics occupants over the last month, I’ve reflected on the mix of ages, ethnicities, genders, socioeconomic status found here. Cancer is happy to invite anyone. No one is exempt from its touch. As we have our treatment, each patient and their support person mostly wait quietly, eyes avoiding contact, wait for the infusion to finish, wait for healing, wait for death.

This week, getting up out of our pod, breaking out of the waiting space, broke the ice. We were no longer sad strangers or powerless victims across the room. Despite our differences, we are connected by our cancer, our treatment, our waiting, but more powerfully than that, as we discovered, we are connected by our love for our family.

Some of the people we shared chocolate with were only hanging on to a fine thread of life. Some had been through many rounds of treatment, hit time and time again by a new or returning cancer diagnosis. Some were courageous, others weary. Humor helps.

So, what did we talk about over chocolate and chemical infusions?

Every conversation had a common theme. Unlike, normal social gatherings, no one spoke of what they do for a living, no one spoke of work, no one identified by their life accomplishments. On the edge of eternity, those social identity markers no longer hold weight or significance.

We talked about family. We talked about love.

As we mentioned our anniversary and reason for our little circuit of the room, people’s eyes would shift from initial pity to deep reminisce as we smiled and engaged in each conversation. One man, who has terminal cancer and is now counting his months, expressed his satisfaction with life, he has 17 grandchildren. Another spoke of her children who have moved to Australia and how much she misses them at this time. Another spoke of all the memories he is intentionally making with his wife and family, going places, doing things together, making life count. One woman, who could barely speak, leaned in close as we spoke of love and life. Her eyes spoke more than her whispered words. One we laughed with loudly over our childhood love of lollies.

Family was the music that serenaded us on Tuesday.

“Love is so supremely important”

I’ve been reading a great book, “Tuesdays With Morrie” by Mitch Albom, which captures conversations between a dying profession, Morrie, and his grad student from 20 years ago, Mitch. They discuss many of those ‘on the edge of eternity’ questions we all have: marriage, family, money, death, emotions.

Here’s what Morrie shares about family on one of their Tuesday conversations…

“The fact is, there is no foundation, no secure ground, upon which people may stand today if it isn’t the family. It’s become quite clear to me as I’ve been sick. If you don’t have the support and love and caring and concern you get from a family, you don’t have much at all. Love is so supremely important. As our great poet Auden said ‘Love each other or perish.’”

“This is part of what family is about, not just love, but letting others know there’s someone who is watching out for them. It’s what I missed so much when my mother died - what I call your ‘spiritual security’- knowing that your family will be there watching out for you. Nothing else can give you that. Not money. Not fame… Not work, he added.“

Morrie’s Tuesday chat reverberated with each chocolate inspired conversation we had in the cancer clinic on our Tuesday. Each person facing death found their ‘spiritual security’ in the tangible love of their families. Money. Fame. Work. None of that counted. Death is a great leveler. So is cancer, whether we survive it or not. And in that flattened state, stripped of everything else, one things stand out above the rest. Love is supremely important.

Life is Like a Box of Chocolates…

We can feel hard done by when special moments or occasions are robbed from us. Or we can find ways to steal them back. Turn them into something precious despite the circumstance. I’m so thankful for this memorable anniversary with Anton in a cancer clinic. We might have got the chocolate most try to avoid, but we’re learning to savour the bitter-sweet flavour and find delight in the candied it can yet bring to our lives.

Courage, Love and Legacy | Points to Ponder

Family and love can be a sensitive subject. Take time to acknowledge your feelings towards it as we ponder it’s value.

When you consider Morrie’s words “Love is so supremely important” ….

• Do you agree with him or do other aspects of life (work, money, fame) take precedence in your life?

• How does your life reflect a deep value for love and family?

• Who comes to your mind when you think of ‘spiritual security’, someone always being there, watching out for you? How can you treasure and nurture this relationship?

• How can you extend the gift of love to someone today?

And wow, what a week it’s been! Wild and wonderful. Exhausting and exhilarating. A flight filled with a myriad of emotions and experiences.

Smooth Take-off

I’m not a good flyer. Anticipation starts to build from the moment I book a flight, and steadily grows as the days count down to take-off. The build-up to my first treatment was similar. I was excited about the destination, and apprehensive about the process.

Treatment started with two days of infusions and overnight hospital stays for monitoring. In my preparation and packing, I was solely focused on getting through the infusions. My high risk status for immune reactions or a serious kidney issues (TLS) from the breakdown of cancer waste products, as well as family logistics had filled up every compartment of free space in my mental and emotional capacity. In my mind, there was nothing beyond those few hours in the cancer clinic, strapped into my seat, no escape, connected to the drip that was determining my life.

Amazingly and gratefully, all went super smoothly - no adverse reaction events, just a “boring” two day’s of sitting in a comfy lazy-boy (business class for us cancer crew) with great company, lovely food, a wonderfully attentive nurse, and one too many toilet trips, awkwardly trying to navigate my drip on wheels past all the other people on the voyage. Drinking over 8L of water (unquenchable thirst response) and dripping in electrolytes at a high rate, is recommended but has it’s downsides!

Turbulence

What caught me out was the turbulence once we were underway. I hate turbulence on a plane. And this felt similar - that feeling of being trapped in a body, doing things without my permission, with no way to escape. Steroid induced hunger (yes midnight snacks were a thing), completely frustrating insomnia following the infusions and then extreme bed ridden fatigue lasting for days, as well as agitation, emotional lows and the general down as the meds and cancer left my system. I went in under-prepared this time, and I had before, when I had back surgery a few years ago. I was so focused on just getting through the procedure, I did not really commute the recovery and rehab that would follow and got taken completely by surprise by how hard it was. Detoxing drugs is not fun. Ever.

When we board a plane, we get the safety card and the air hostess briefing, outlining the very high risk stakes… oxygen masks, water landings, a fire during flight, crashes landings. All the life and death stuff we most want to avoid. But on long haul flights, people mostly experience other types of discomforts, not those highlighted in red and yellow. There’s travel sickness and nausea, back and leg pain, snoring neighbors, difficulty sleeping, eating at weird times, the conundrum of how many times it’s appropriate to visit the loo in 10hrs. Throw some young kids or a baby in mix and the games really begin! Not to mention the eye spinning, brain numbing jetlag on arrival.

But we anticipate these things, and take steps to mitigate and care for ourselves. And that’s what I’ve had to learn this week. I’m on a long haul flight. Take short gentle walks, stretch my body kindly, keep hydrated, use ear plugs when necessary, sleep when I can, allow other people to serve the food and do the dishes, let the kids watch one too many movies. All simple and practical steps to nurture my needs as my body goes through this treatment process.

Maybe we’ve only got capacity for so much at a time, a bag limit per se, but as I lie in bed at 4.30 this morning, typing this, I’m a lot more comfortable with the insomnia after infusion round 2 today, because I was anticipating it. I know it will pass, and so instead of fighting or fearing it, I’m better able to embrace it. Next time, I’m facing a situation like this, with big red risks, I also want to invest more time and energy considering, planning and packing for what’s not in the safety briefing, but will make the journey more comfortable along the way.

Free-Fall Landing

Another reason, I’m also super ok with my present wired-awake state is, because, this morning, I received my first weeks blood results. And I’m so thrilled, I’m half-pie wondering if it is steroid sleep issues, or just being on a happy high.

In my pre-trial blood test a week ago, my lymphocyte count was up around 330,000 (normal range is 1,000 - 4,800). It had steadily and steeply climbed that high over the last 18months (unusual for my cancer which is usually slower and more indolent). I’m not good with heights at the best of times, I fear flying and get dizzy on a ladder, so having a sky rocking blood count, somewhere up in the stratosphere, was pushing my comfort levels!

And then today, only one week from that first litre of “Obi”, I’ve free fallen all the way back down to a lymphocyte count of 7,800 (& a WBC 5,000). Wow, what jump! I would never sky dive or bungy jump, but I have found this rapid reduction in altitude absolutely exhilarating. 330k to 7.8k in just 7 days! No wonder I’ve been knackered. My bodies been working hard behind the scenes.

How absolutely cool and remarkable is that? I know not all the cancer is gone from my body, we need the treatment to hunt out the many sneaky little cells hiding deep in my nodes and peculating in my blood marrow. But my life blood, the stuff flowing around my body, has a greatly reduced cancer burden. Healing has kicked off with a leap. Cancer has been assaulted in a good way.

I’m so thankful for Jesus, this trial treatment and all the people in between. I didn’t jump without a parachute. My parachute was woven together with the skills, knowledge and expertise of medical experts I’ll never met, other cancer patients who trialed these drugs before me, my specialist care team, my family and friends close to home and close at heart, my faith warriors who carry me in their prayers, my God who I’m tethered to, always.

Courage, Love and Legacy, points to ponder…

I have neglected to include this little closure to my posts recently and I want to reintroduce it today, because this is the part about legacy. This section is about these blogs providing you the opportunity to glean from my journey and invite it to resonate with yours. For you to go deep into your own heart and find hope and healing where you need it. So please take a moment to reflect on your own life for a moment…

• What victory or smooth sailing moment, small or large, can you celebrate today?

• What long-haul challenges are you facing, and how can you create rhythms and habits to care for and nurture your needs (physical, emotional, spiritual) along the way?

• What and who is your parachute woven together with? Who has got you covered? Who would you like to you reach out to today, to express your gratitude for their love in your life?

PS - if you’ve found this blog impactful, insightful or helpful, please feel free to share it with others who you know might need it today.

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PPS - I’m now anticipating an emotional and physical low in the next 24hrs as the drugs vacate my system… I might not be up for phone calls but if you’d like to send virtual hugs and encouragement, that always help low ebbs. xx

Let me take you back to earlier this morning and how the day has played out…

While waiting for the call, I took time to sit on the beach and observe nature. The rippling, dancing silver-sheen waves, the clouds that turned from pillowed quilts to fine feathers in the blue sky, the bright and cheerful bird call, the glistening grains of sand, to numerous to count and I felt blessed.

These song lyrics played over in my head…

The call came, later than expected, and as I waited for the nurse to announce my future, I sat, a block of charcoal in hand, etching the words “I have found the one who gives me rest” into the sun-dried tree log I was sitting on.

She said “Arm B”. I wrote “rest.”

I’ll be honest, the news wasn’t what my heart was hoping for. But I have a hope that is beyond my own knowledge and desires. So I had a big cry (good grief is an important part of this journey) and talked over my disappointment and fears with God. Then, I hauled myself up and made the hard choice to bounce back, because I want to model ‘faith beyond feelings’ to my children.

And I can do this authentically, no shutting down, avoidance behavior or “faking it until I make it”, because of what I observed on the beach this morning. Glistening sand comes from the breaking down of silica, rock and quartz. Time, weathering, a hard journey, to end up there in such a delightful form at our feet. Waves rise up from murky cool depths, crashing to the shore, while sunlight playfully dances on their surface as they thunder down. The charcoal in my hand could be turned into a diamond, in the “right” conditions - under immense heat and pressure. I can’t shy away from this profound truth marked out all around; the earth itself sings of it.

There is no light without the dark. Authentic beauty is rarely found without pain, weathering, and depth. Strength is not found without an uphill climb. Resilience builds in response to resistance. Faith is born in fire.

The next few weeks and months will certainly be challenging to navigate for our family. I have been deemed “high risk” due to my high tumor burden and next week I’ll be in hospital for two nights as they monitor the risk of reactions - both an immune reaction (from the immunotherapy; the first drug of a two drug combo) & the risk of TLS due to the incredibly fast break down of cancer cells. Each week, for the next two months, I’ll be in for infusions (& possible hospital stays depending on my reaction). There aren’t just the reaction risks to worry about; there’s the emotional strain and logistical juggle that puts on Anton and the boys as well. Pressure is found here. Risk. Weathering. Being stretched and broken down.

And I’m so thankful for all the care and support that is being offered. We’re not doing this alone or in isolation. We are blessed by family and friends all leaning in and walking this road with us. My children’s hope and faith astounds me. Beauty is found here. Love. Kindness. Gentleness.

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This is the dance of life; it’s wild & it’s gorgeous! And so I dance!

Last weekend Anton, I and the boys were at WOMAD (World of Music and Dance) to celebrate Anton’s birthday. We danced, jumped and twirled until our leg ached and our mouths yawned. It was a very special occasion, and it shone all the brighter for me, knowing what was on our horizon. These moments are precious and we treasure them all the more, when we don’t take them for granted.

I look forward to hanging in hospital next week and sharing with you some more reflections from the journey. I do this for a few reasons:

• It’s a super healthy way for me to process my own journey.

• I want to model courage, love and legacy to my children and these entries are a record of that for them.

• It’s wonderful to be able to share the journey with you, knowing, even though we live in a remote little spot, we’re not alone, that you walk beside us.

• I want for these blogs to be there for others who find themselves in hard times, be it facing cancer, dealing with death, trauma, or any other pressure cooker situation. May these notes resonate with your heart, encourage you, surround you with love and hope and inspire you to live for legacy, no matter what. (& If you know of people who might find these blogs helpful, please feel free to share it with them)

With Courage, Love & Legacy

Kylie