Beginnings

There is a day on our Gregorian calendar which we mark as the date of new beginnings. As our orbit seamlessly continues, we choose to call this day the New Year. Out come the fireworks, as well as the reflections, the resolutions and the resets. This is the year I will do, won’t do, should do, can do…

Celebrating New Years on the 1st of January was a holiday established by Julius Caesar in 46BC, to bring a sense of time order to the Roman Empire. Interestingly, the name January comes from the god Janus – the god of new beginnings. He was often illustrated with two faces, one face looking into the past; one face looking into the future. Reflection. Resolution.

But many other cultures, ethnicities and countries have different dates from which they determine to mark this annual transition from one year to the next. These may revolve around celestial cycles (moon or star positions), religious or deity celebrations, agriculture, crops and harvest cycles or the start of a season, the beginning of rainy seasons or spring.

Realizing New Years is really a man-made construct, that takes on different shapes and forms all over the world, I, some time ago, gave up on the New Years resolution pressure that I had once exerted on myself.

Rather than revolve around that fabricated form, I’ve found fulfillment in creating a more natural flow of pursuit and purpose as I journey forward. Following the ebbs and flows of the seasons, I will consider what is most on my heart, the growth I’m yearning for, what I’m thankful for and seek out a single word to capture it’s essence.

“Presentce” | “Alignment” | “Rhythm” are a few of the words I’ve lingered with over the years.

This word, this desire, this cry then becomes my seed, I plant and nurture it, water it and wait for it to bear fruit in my life. It’s not a list of to do and not to do’s. Rather than being burdened by cumbersome expectations, I feel free to be curious and explore. The word becomes a gentle grace calling me forward, birthing fresh perspectives, thoughts and actions.

New beginnings are always available to us. In every season.

May we all be blessed with hearts that are open to gratitude and grace throughout our year.

Birthdays

A couple of days ago, I turned an unremarkable number. It wasn’t the celebration of another decade passed. Or even a half of one. Just a stock standard birthday. When asked how I was feeling about getting older… I found it didn’t feel unremarkable, it felt great!

I know that once people get over 40, there can be this corporate sense of impending deterioration. We say things like “I’m over the hill”, “oh well, the best years are behind us”, or one of my favourites from Vanuatu: “sun i stap go down” - the sun is going down!

But not for me. Being diagnosed with cancer and being informed there is a possible limitation on my successive birthdays (this side of 70yrs), I am thrilled to get another one under my belt! I’m not counting aches and pains, perimenopause, grey hairs or wrinkles as signs of deterioration - but of life! I am alive. I am living. It might be in an aging body. But I’m here. With my family. With my friends. With a future.

Age, too, is a construct of sorts. In my work in Vanuatu, I met many a person who did not know the year they were born. Time is told by harvests that have come and gone; or cyclones.

May years ago, in Loukatai, a small village on Tanna, I spent time with an ancient looking, old woman who was not counting her years, but the size of her growing garden of grandchildren. To my constant surprise, she is still alive all these years later and, I believe, it’s because, for one, she doesn’t look at a date on her birth certificate, but keeps her eyes focused on the love and life in the world around her.

May we all be blessed with less of an awareness of our age, and more of an awareness of our legacy.

Blood tests

The other aspect my life now revolves around is blood tests. Unlike beginnings and birthdays, the scheduled routine of these is more ominous. More daunting. And a marker that attracts greater attention than the others.

Friends and family check in regularly: When’s my next blood test? What were the results of the last one? What do the numbers mean? What trends am I seeing? What does the specialist think about them? For those interested, here’s the latest graph… pretty consistent, upward trend for the last 10 months.

These blood tests, whether I like it or not, have become a key determinate of time in my life. Not only do I count weeks from the last one, or to the next one, but they also are my indicator of time - time to treatment, time in remission, potential time left on planet earth.

I’m getting more comfortable with the routine; it’s pretty short intervals now - every 6 weeks. I feel less anxious as the day of a test arrives, and less desperate to get the results. I’m processing them better than I was a year ago.

This too is a measure of time: how far I’ve come since my initial diagnosis. It’s less of a roller coaster and more of a log flume ride. I can preempt the stomach drop, prepare for it and hold on tight for the couple of seconds of adrenaline pumping, heart stopping, giddy contact with the email that tells me which way my numbers are tracking. And then I can breathe again.

Because I no longer gauge my reality solely on the numbers or the chart. I will not be determined by data, because my life is bigger than that. It’s made up of Courage, Love and Legacy. These are not bound by time. Nothing can regulate their report:

Courage tells me to continue to take steps towards a future I cannot see, but I can sense.

Love tells me to share hugs, laughs and encouragement extravagantly, because life is always better when these things abound.

Legacy tells me to live boldly, wide open, and full of anticipation because the seeds sown in this season, reap a bountiful harvest in the next.

Time

Time passes us by in so many ways. We note it’s passing in our community celebrations, the changes of seasons and the personal schedules and routines that often dictate our days. For me this season, time has been noted with new beginnings, birthdays and blood tests. I’m finding ways for time, not to master me, but for me to master it, by remaining present in the moment.

May we all be blessed with bringing our presence to the present.

This Christmas, despite the relentlessly rising cancer count in my blood, and my reducing hemoglobin/iron levels (which make walking up one flight of stairs quite a feat!), I am discovering how to orientate myself towards hope, peace and joy.

As the end of the year nears, I’ve been reflecting on what it is to have no clear path for 2024 and more questions than answers…

• treatment or not this month, this summer, next year?

• what kind of treatment - chemo, pills or a cancer trial? Funded or fundraising?

• how sick could I get or how long will I remain well?

You get the point. There is the permanent unknowing, a surrounding darkness to this journey that is hard to articulate or define.

Yet, somehow, I can still wake up most mornings feeling hopeful about the future. There is a promise of good things to be unwrapped, explored and enjoyed.

Kind of like Christmas morning.

Christmas holds a tension for us as adults doesn’t it? On one hand there is a compulsion that drives excessive consumerism, busyness and over-consumption. A toxic load that leaves us feeling exhausted before we even begin.

But, on the other hand, if we allow time and space to feel it, there is that sweet anticipation that builds as the days countdown. Because there is something beautiful and inviting in feasting, fun and fellowship. There is an invitation to behold the light of love.

And, really, it comes down to what we choose to focus on. Orientate towards the promises and the Light or towards the consuming chaos.

Where we fix our eyes determines our direction.

With cancer, it’s easy to get consumed by the chaos of results and treatment and sickness and fatigue and failing health.

But being acutely aware of living on the edge of eternity also provides an opportunity to seek out the tinsel glimmering light of hope and life and laughter and companionship and savoring sweetness. Extracting the goodness from every moment available to us.

And like a child at Christmas, believing there is something good under the tree, we can look for the gifts in our lives that fill us with joy and wonder. It might simply, yet profoundly, be our next breath or it might be our blessings, too numerous to count.

Intangible Gifts

Moving from disorientation to orientation this year has been about learning to fix my eyes on the promise ahead. When I start to feel uncertain or worried, I need something solid and steadfast to attach my attention to. In my, crumpled on the floor, desperate times this year, I have unwrapped God-given gifts of hope, which I now treasure. Intangibly tangible, they have guided me through the rough and perilious paths that have existed between this Christmas and the last…

• “On the day when the enemies of Gods beloved had hoped to overpower them, just the opposite happened.” Esther 9:1

• “Peace be with you, do not fear, you shall not die.” Judges 6:23

• “I will give them an everlasting name that will not be cut off” Isaiah 56:5

These personal promises have been like stars in the dark of my night sky. Stars used for navigation. Stars used to lead in a homeward direction. Stars to follow. Stars to guide.

Star of wonder. Star of light. 🎶 🎶

I’m sure that you have gazed starward on an clear, cool night and marveled at the majestic stretches of the heavens above. Wonder. Peace. Joy. Each of them a gift. The essence of a gift is that it is given freely. The extraordinary beauty of gifts is that we don’t have to do anything to deserve or receive them. Only reach out and accept them.

This is my hope, writing today. That, despite whatever you might have going on in your life right now, you find a quiet moment to notice a shining beacon of hope in your night sky. It might only be one star; it might be a whole Milky Way’s worth. Either way, receive that as a gift, and allow it to orientate you towards wonder, peace and joy.

PS: this Christmas Day, you’ll receive a very short email from me - just a little gift, a poem; a summing up, if you will, of this sense of seeking out promises.

During this first year of living with an incurable cancer diagnosis, I have found the psalms of lament resonate deeply. Here, I have found an honest expression of the wrestle with the turmoil. I also discovered an intricately woven thread which offers to guide us from despair to hope; from the sacred place of lament, to the sacred place of faith.

I was recently invited to share a message framed around the Psalms of Lament, as part of a series on the Songs of Gods People. The feedback from friends and strangers has been overwhelmingly positive - that this much-needed message gives permission for vulnerability and processing our pain. So here, I share it with you.

Join me as I reflect on Psalm 77, which reveals a path through this labyrinth. Discover the place and posture of lament, as well as how the psalms acknowledge this very real and raw place and give voice to the deep cry of our spirits in times of hardship.

Stories of resilience, of survivors, of thrivers, of people who go through really tough stuff but, somehow, hadn’t sunk under the burden of it all. What was the ingredients to the “somehow” I mused?

The Power of Gratitude

One of the themes that kept coming through, is that people seem to able to handle the hard hits when they can express thankfulness and gratitude despite the enemy they face. Gratitude is a force to be reckoned with.

So today that’s what I want to bring to you - my gratitude.

For my first year living with cancer, I am thankful for…

1. Rescue. I’m thankful that every time I felt like I was slipping under, drowning in the turmoil, there was always a hand to pull me out. Time and time again. Thank you to all those outstretched hands - Jesus, Anton, my parents, my children, my wider family and community of friends, other CLL’ers.

2. Writing. This blog has become a treasured creative expression for me. A safe place to process and share my thoughts, feelings and experiences and receive such encouraging feedback.

3. Health. Despite my diagnosis, despite what the blood tests say, I am actually well. I am fit. I am healthy. I am capable.

4. Peace. Always holding my hand. Always.

5. Lament. Journeying through grief, wrestling, worry, facing my mortality and an uncertain future has been hard but rewarding. I’ve taken time to understand lament and develop grace for it in myself and for others.

6. Adventure. As a family full of commitments, we’ve still made time for some wonderful adventures. I love exploration in nature. Getting out and feeling risky, wild, free and alive. That brings life to my spirit, always.

7. Kisses. I love that all three of my young sons still feel open enough to share tender hugs, kisses and I love you’s with their mom. These are glimmers of the divine to me.

8. Slowing down. I never thought I’d willing submit to a rhythm of life that wasn’t full of outward investment. But here I am treasuring, rather than resenting, quieter ebbs and flows.

9. Food. Now for anyone that knows me well, this one will surprise you. Anton has always been the lover of food in our home. I’d happily eat peanut butter sandwiches day in and day out. But nourishing, healthy, healing food is becoming something I now savor.

10. Community. While at times this year, I have felt hamstrung with my new limitations, being part of a community home-school and church where I could, within my capacity, apply my skills and strengths has been such a gift.

How blessed am I?

No cancer can steal joy from a heart that has treasures to sing about on a daily basis.

I’ll leave you with this question, because, remember, gratitude is a force to be reckoned with!

In fact sometimes being the odd one out can be a matter of much misunderstanding & hilarity ... walk with me ...

Awkward Hour!

Recently I facilitated a workshop on resilience at a camp for young adults. Following it, on the Sunday afternoon, there was a leukemia workshop, also on resilience, hosted by a cancer care organisation. I decided it would be interesting to compare notes on facilitation and resilience tools so I registered. A good friend of mine also kindly accepted the invitation to join me - with the promise of lunch and some fun together too... little did she know what she'd signed up for!

It was a beautiful day; the workshop I'd delivered was impactful and resonated deeply with the participants; I was now in relaxation mode. My friend and I had enjoyed a lovely lunch and then leisurely made our way to the leukemia workshops venue, nonchalantly wandering through the door.

And then bam! "Odd one out" syndrome strikes hard and fast, catching me completely off guard!

A room full of older, grey and wrinkled folks, with various degrees of mobility or lack of, were seated around tables, cordially chatting over cups of tea. Now, I love spending time with retired people and have many great friends in this age bracket, but suddenly, in this environment, that 30 year diagnosis difference was visibly evident to all and sundry, most of all me.

It didn't help that both the host and facilitator then assumed my friend (who has a few years on me, but not that many) must be the 'diagnosed' one. The whole hour was awkwardly endured as the facilitator frequently glanced over in my friends direction, imparting much of her wisdom and providing her plenty of pointed looks full of affirmation, encouragement and empathy.

As my friends face flushed red and she wiggled uncomfortably in the hot seat, hoping to avoid being the object of the facilitators misguided inclusion, I did battle with the escalating desire to hold my hand up (like a school kid) and reluctantly take credit for being the youngest diagnosed person in the room.

It took all my effort to also hold down those inappropriate and irrational giggles that were bubbling up and threatening to completely overwhelm me.

Needless to say, as soon as the meeting wrapped up, we left rapidly and then, out of ear shot, laughed until tears rolled down our cheeks and our sides ached. In that moment, I was so thankful for my friend. Because it really was laugh or cry. And belly laugh we chose.

As awkward and uncomfortable as that hour was - there are some great takeaways from it...

Assumptions and Unconscious Bias

As humans, we have this rapid "criteria, assessment and determination" process that we are constantly filtering others through. If they are xyz, then they go in this box. If they are abc, then it's that box. Our categorisation and social stereotypes of individuals is based on our experiences, perceptions, world view etc. We often don't challenge our unconscious biases, unless something disrupts them enough to make us consider how and why we are determining our selections. In that resilience workshop, the facilitator assumed it was my friend with cancer, probably because she was the older of the two of us. I could have disrupted that for her. For many reasons, I didn't.

I'm aware I get put in a box that probably reads "young, healthy, fit, confident, capable." And on my good days that's a fairly true assumption to make. Little do people see the days I lie wrecked on my bed, wondering where all my energy has gone. Wondering if I'm ever going to be able to do anything 'normal 'again. Those dark days, when I feel like l should pack myself into the retired box, tape the lid on, carry it down to the basement and leave it there.

And it's makes me wonder what goes on for others I pass in the street, at school, at sports practice... what assumptions and unconscious bias do I project on to them and their lives without having any idea of what's going on in the privacy of their own homes, bodies and hearts. What are they struggling with? What are they celebrating? What barriers are they burdened with or trying to bust down?

We all know the adage "don't read a book by it's cover"... I'm reading To Kill A Mockingbird with my son for school and I'm inclined to this take on that concept:

"You never really understand a person until you consider things from his point of view. Until you climb inside of his skin and walk around in it."

In recent months this idea of climbing into someone else's skin has resonated deeply with me and it's something I want to be more mindful of, more prepared to do. I'm out of the box, really we all are. Let's take the time to unpackage each other and get below the surface to explore and try to understand what's really going on in each others lives.

Resilience

And, good news, yes I did get some takeaways from the actual topic of the workshop! When dealing with a chronic, long-term illness it's important to have things in your life that fill up your tank, that nourish your body, mind and spirit. That bring joy.

And also how important it is to be able to say no to things that deplete and diminish your reserves. Having things to say yes to, helps with being able to say no.

For me, I thought I would appreciate being with others who share my diagnosis. I love to encourage, build up and connect with people. I went into that room full of hopeful expectations. I came out drained and distressed. Being the odd one out, in this case, was really devastating. It reminded me of all that is wrong with this cancer diagnosis. It highlighted just how out of the box I am. Reflecting on it later, I felt uncomfortable, isolated and alone.

This was not the fault of the well meaning facilitator, the friendly host or the kind elderly patients. This is just about where I'm at in coming to terms with being a CLL patient. That day helped me discover that I'm not quite ready to attend leukemia workshops; that being affronted with my own rarity is not going to help me at this point. So, for now, it's a 'no' to that kind of workshop, as it won't help me build the resilience I need to carry this burden.

And that day affirmed my 'yes' to my friend, who courageously received the "empathy eyes" on my behalf! My yes is to quality time, to laughs and sunshine walks. To having a support plan so that when I'm low and overwhelmed she knows how to help & vice versa. To building each other up and loving one another through every season of life. To celebrating all that makes each other unique and awesome, despite our frailties, failings and flaws. To being willing to walk around in each others skin, to taste, feel and experience life from another perspective, without judgement or bias. Empathy grows resilience too. I didn't learn that from the workshop, I'm learning that through life.

Courage, Love and Legacy

There is nothing wrong with being the odd one out. As I mentioned at the start of this blog, it is usually something I aspire to. I love uniqueness, creativity and variety. It's the individual facets of a diamond that reveal a deep and valuable beauty.

And then sometimes being different is really hard and uncomfortable. And because everyone finds themselves in that position at some point in life, we all need to be mindful of our own unconscious bias and choose to extend empathy and grace to others as well as ourselves.

This story is about an one off event where I suddenly found myself confronted with the stark reality of my diagnosis and it gave me a fright. I know older CLLers have so much wisdom and experience to impart so I'll be back for support groups in time, when I feel strong enough to be ok with being the odd one out. Less than a year into diagnosis, I found a raw and tender spot that I wasn't aware even existed. Until it did.

Grace builds resilience too. Being ok with ourselves when we suddenly find ourselves not ok. Where can you extend grace to yourself or someone else today?

I'm certainly grateful not to be dealing with the effects chemo treatment (the only first line treatment option available currently in NZ). I'm also grateful not to be standing on the edge of a life and death precipice, which is how those first few months felt. I'm grateful to be feeling well, feeling enthusiastic and adventurous again. I'm enjoying making the most of opportunities and not being burdened by the weight of worry every day.

But under this surface of optimism, I'm kind of confused.

Not treating something that is multiplying inside you and has the potential to kill you is a very strange and unnerving feeling. I understand all the medical rational - completely. There are only so many treatment cards to play, so only table them when absolutely necessary to buy some time. Fully makes sense.

And it's not that, that I'm confused by.

My confusion lies in learning how to live with an existential threat, looming daily, but not actually doing anything that I'm impacted by... yet.

An existential threat

We took our kids to Wellington a week ago to visit my 92yr old grandmother, and while we were there we visited a Jurassic Park Lego exhibition. It was so cool and creative and we had such a fun time. We were the wild, weird ones - being chased and eaten by the dangerous dinos.

Our boys got a bit squeamish when I asked them to take a pic of Anton and I kissing under the T-Rex... was pretty funny seeing them get all awkward with their parent's pashing in public! We've entitled the picture - the last kiss.

And now I kept musing over the photo. Because, it has unintentionally captured how I feel in this new season. I'm embracing life, as passionate and purposeful as I ever was, but now there is this enormous existential threat, that is just...well...hovering. And, because it's not really tangible, I'm almost pretending that it's not really there - that it's not quite real, just a construct. I've kind of slipped back to living with mortality in the background. I sometimes think I'm living in blissful denial. But I'm not... not really.

You can see in the photo, my eyes are wide open. I'm not oblivious: the cage, which kept the death threat contained, has been unlocked. The facts are pretty hard to ignore. Just like it would be hard to ignore T-Rex, unleashed and breathing down on you.

I know the cancer is there... but for all intents and purposes, with the daily ebb and flow, the bustle of life... is it?

Just like our shadows, constant connected companions that come and go...or do they?

Sensing the conundrum?

When I check out various CLL sites and online support groups, I find many people who have lived with it for years, and advise to get on with life, just forget about it. I'm sure the adjustment to that level of confidence and sense of security comes with time. But I haven't landed there yet (remember I'm only 9 months into this).

The sudden shock of diagnosis and the fast rising white blood cells counts over the next 3 months has left me feeling suspicious and uncertain. I'm not sure if the next blood test will bite or not. I'm weary of what the results might be.

Courage, Love and Legacy

This blog is a musing, because I don't have any answers today. But I just want to share where I'm at. Because I know you're wondering.

And if you're on the same journey as me, living with a permanent shadow of a cancer diagnosis, then you too might be wondering how people ever get to that illusive shore of serenity...

Let's walk together awhile longer and see where the journey takes us.

And for now, be free to sit in the wrestling place and wonder...

What questions have you had along this journey? What confusion or conundrums have you faced?

I've been here before with Malachi. And expect I'll be here again with Ezra. I also find myself poolside (swimming), ringside (taekwondo), beach-side (surfing), trail-side (biking)... The list goes on of the sports my boys love and excel in and which I find myself in a taxi / support/ cheering role.

It was at the Western Bay of Plenty cross-country this year that I suddenly found myself deep in reflection about being on the sidelines, not just sports sidelines, but the sidelines of life.

I had spent the morning with Judah, coaching him on the race ahead. As his heat drew near, I settled him at the start line, left him there and made my way to good viewing / photo spot to observe the start of the race.

Waiting for the gun to go off

While waiting for the gun to go, a feeling hit me, that I found hard to name.

I could feel nervous anticipation rising. I wasn't the one running the race, but still, the butterflies arrived. My heart was beating faster than normal. I was edgy. There was an adrenaline heightened awareness.

As I've mentioned, I've been on the sidelines a lot. We never worry about winning or what place the boys come, but enjoy the feeling of accomplishment and celebrating them running their best race. I usually get excited. I'm that mum who loudly runs alongside my kids, vibrant encouragement bursting out.

But this feeling was more than that. It was stronger than I'd experienced before. The competitors had lined up early so I had a few moments to investigate what was going on for me.

And as I tried to make sense of where I was at, another memory flooded me. It was when Judah was little, just a baby. He had to have an operation at about 6 months old and, once he was under general anesthetic, I had to leave him in the hands of the doctors. I was experiencing the same heart racing, adrenaline heightened awareness I had felt as I walked alone down that long, lonely corridor in the hospital, deeply anxious about the separation from him during the procedure. Hating leaving him alone, unconscious on that hard, cold, sterile slab.

It dawned on me then, standing on the sidelines of the cross country race, that I was again feeling that same level of anxiety and fear. I was afraid of leaving my son alone to run the race without me. My cancer diagnosis, which I had been doing my utmost to tuck out of mind, had snuck in without my permission and was running amuck with my emotions. The figurative gun to my head. Waiting for it to go off.

This race was no longer just a race. It was symbolic of my life with my children. Of my desire to always be there for them. Cheering them on. Giving them advice and encouragement. Never leaving them.

I could feel the distance between myself and that start line where Judah stood ready to go. And I had to fight to urge to run and be beside him. So that he'd know I was there. That I hadn't left. That I'd never leave him.

Bang! The noise of the gun brought me back to the present reality and there I was, breathlessly racing around the track, snapping photos, cheering him on, celebrating his stamina and strength.

He pushed himself harder than he ever had before. He absolutely smoked it, coming 9th and qualifying for the Regionals. As he bent over with exhaustion, trying to catch his breath, I too had time to catch my own.

Run well my children

I revealed in his independence, confidence and self-determination. I felt humbled to watch him run so well and realised, in that moment, that although I've given him the gift of life, he's the one who has to run his race. As all my children have to.

It's a privilege to be on the sidelines cheering them on, and I want to invest my time well, so that I'm confident that in their lives, they are equipped to run their best race. But there will come a day when I'm not there, sooner or later. When my voice is no longer audible and exuberant.

It was an uncomfortable feeling facing that sense of inevitable separation.

But I found hope there too.

Hope in the strength and courage of my children. Knowing they will run well. Knowing they have others cheering them on too. That my voice is not their only source of encouragement. They have their family. Their friends. Their community. They have God, who is ever present and ever loving, whose exuberance over them completely overshadows mine.

Courage, Love and Legacy

It's such a beautiful thing raising children. It's such a privilege. There is no doubt that being a parent takes both courage and love, all in the name of legacy. But it's not a position to take for granted.

All to often these days I know of mothers and fathers being diagnosed with cancer or some other life-effecting illness while their children are still young. I have friends who have lost husbands and wives, been widowed and left raising their children alone. The wrench and the heart-ache in those moments seems insurmountable.

The years our children are dependent on us are a treasure; the moments we have with them, precious beyond measure. Cancer has made me all to aware of the fragility of this existence and its made me cheer all the louder from the sidelines. So that my voice of encouragement is never forgotten. So that the wrap around hug at the end of the run is always felt. So that my children are infused with courage and love for their race ahead.

Where is your voice of encouragement the loudest and most exuberant?

There was 14 of us altogether - eight adults and six kids ranging from 5yrs to 12 yrs. We had six canoes, countless water-proof barrels, sets of warm merinos and bags of yummy treats. Once on the river there is no cell phone reception or access roads for three days - we were heading into the wild!

I booked the trip last year, well before my cancer diagnosis and, for a few beats, as the weekend approached, I did reconsider going. I wondered if it was more risky than worth it, particularly given the following week I was scheduled for an appointment with my specialist about treatment options. What about risk of fatigue, infection, letting the crew down. But with some gentle encouragement from my husband about living fully while I am alive, I put the niggling doubts aside and decided to embrace the journey.

And what a journey we had... there was plenty of deep calm gorgeous gorges where still water had us paddling gently forward, there was also plenty of fast water where we dashed past stunning scenery, and then there were the rapids. Fast and furious, wild rides. Where you had to fully commit and let the rivers force take you and hope for the best. There were whirlpools and backwash eddies. Waterfalls, caves, beaches. Magnificent, towering ancient forests.

Rafting Up

Near the end of the first day, we rafted up our canoes and drifted together. The steady current carried us forward. Held together by 14 pairs of hands, we all closed our eyes and our mouths and were still; quiet. Listening to the heartbeat of the forest. Trusting. It was such a peaceful moment. Letting go and going with the flow.

Caution Rapids

At the end of the last day, we hit four "caution" rapids in a row. Here, eyes and ears were wide open. Assessing risk, navigating waves, fast decision making. Shouts and whoops as we hit the break waters and were swung wildly by the unpredictable side currents. We learnt, here, just as in the still waters, that there was still a level of letting go and going with the flow. If we tried too hard to avoid the worst looking sections, if we tried to force the canoes, if we tried to get out too early, there was the very real risk of capsize.

Navigating the Journey

As we canoed, as we laughed, splashed, packed & unpacked barrels, dug deep and wonder-shared, I could sense the parallels with life living with cancer. In those still, quiet, calm moments - it's so important to take time to just breathe, lean in for connection with others, hold hands and listen to the heartbeat of life, appreciating the beauty that surrounds us and allowing our spirits to be invigorated by wonder and love.

Equally so, when we hit the inevitable rough waters - holding on too tight, trying to get out too early, avoidance and fear do nothing for our navigation. In fact, a lot of the time when we are stressed and the internal tension escalates, we can increase our risk, adversely impact our health and cause the journey to be harder. Sometimes we end up stuck in an eddy that keeps sucking us back into the wipeout zone. When we face our "rapids" head on, with a laugh and a lunge into the unknown, going with the flow, we are less likely to end up being dragged down and overwhelmed by our circumstances.

Courage, Love and Legacy

I'm so glad we did end up going on our adventure into the remote and remarkable Whanganui river. I'm so glad I was encouraged to face the "risk" head-on and live fully alive. Magic memories were created with my boys, our family and friends. We all came away high on life, thrilled, inspired and joy-filled. And I learnt a bit more about going with the flow. On the river. And in life.

Not everyone wants to canoe for 3 days in a remote corner of the world. But each of us have activities that fill us with joy, love and memories. Doing them may not change your physical diagnosis, but they will lift your spirit, build your resilience and enable you too to face the more challenging sections on the journey. So I'd encourage you today to get out and do the things that brings life to your world. Live fully alive. Today.

When we're young, healthy and in love, the world feels like a wide open door to unexplored realms of exciting and hope-filled possibilities. We feel invincible. For better. For richer. In health. To love and cherish. And it's glorious.

And now, for Anton and I, in this season, the other half of those vows are coming home to roost. For worse. For poorer. In sickness. Until death. He squeezed my hand back and snuck me a deep, committed and knowing look as their rings were exchanged.

Grey and Old

The following week, my mum and I were in the waiting room of my specialist, watching the comings and goings of fellow patients. Most are older than me and I wonder if they think I'm the caregiver for my mum, not the other way around. Anton is unable to be here, he's working away for three months, because we need the income. A huge sacrifice and burden during this already challenging season. I feel his absence daily.

Sitting there, I watched a fragile elderly couple come through the clinics doors. The old lady pushes a walking frame, an old man with a cane shuffling alongside her. I took note of their features, their weathered faces, aged and wrinkled, the paper-thin skin on their hands, the deep purple veins that protrude. Their stooped shoulders, their tentative, slow footsteps, and yet their tender connection, the life that still exists in their eyes but seems entrapped inside their frail figures. And the weekends wedding vows resonate in my ears. In sickness. For worse. To death.

This is what love looks like, long beyond the beauty and the boldness of when we fall in love. Love has a price to it. Love costs us. Love can hurt. A lot.

The Burden of Chronic Illness

I'll be thankful when Easter arrives, and along with it, the return of my husband. We'll be

celebrating 18 years married this month and I'm thankful he's the man at my side as I navigate this journey. But I also feel horrible that he has to be.

There are future challenges that await him because of my chronic yet aggressively presenting cancer: my limitations, my reduced capacity to work, days in bed overcome by illness, days of being afraid and angry and sad, days of being just so tired and incapable of contributing to daily life. The weight of my weakness. I find that so hard. I want to be like us on our wedding day - equally capable. I don't want to be the frail, fragile one. Not before age makes us both of that anyway.

When we said our vows, I did not imagine he'd to be the one having to demonstrate his commitment to in sickness, to death. I'm 8 years younger than Anton, and figured I'd be the caregiver in our relationship one day... a long way away.

Caring for Co-Survivors

My mum sent me a story written by a woman, Kristin, whose husband went through a number of significant health battles - from cancer to cardiac arrest - all while they had young children. She wrote her account as a co-survivor of critical illness, and that struck me deeply. Kristin had never really felt seen or heard as she attended appointments, visited her husband in hospital, carried the full load of their young family. She wasn't the patient. She felt like she was not supposed to need help or attention because she was not the sick one. Until one day a nurse, Roger, asked her how she was going. Roger understood that her husbands health impacted both their lives. Kristin is now an health care advocate and speaks about the importance of caring for co-survivors. Her journey resonates, not for me, but for my husband.

This journey with CLL is not just my journey, it's a journey both Anton and I am on, together, for better or for worse. He too needs to have the time to cry, to be held, to be supported. He too needs to be asked how he's going. He too needs breaks. The impacts of this are just as (if not more) significant for his life. This disease is a burden for both of us.

Courage, Love and Legacy

But a burden shared is more easily carried. And that's the beauty of the vows we make.

We might not know the full weight of our commitment when we glowingly make them, but they have been repeated for generations for a reason. Because those that go before us know that life is full of ups and downs. There is no guarantee how life will turn out, and there is a solid chance we will all face tragedy and trials along the way. There are times of health, happiness and blessing. Equally so, there are times of financial challenges, sickness, hurt and heartache. Much can be gained in these places of hardship though. It is where the rubber meets the road and powerful bonds are forged. Love takes commitment. Love takes continual connection. Love takes courage.

The above picture of the courageous skinny dipping old couple was the image Anton and I used on our engagement invitation: this image was and is still our hope for life in old age. With our anniversary just around the corner, today I'm so grateful for the courageous love of my husband and that he's my co-navigator as we forge forward together on this treacherous yet tremendous road.

How about you? Who plays a significant role in your life? Today's a great day to let them know they are seen and appreciated for the commitment, support and love they give to you through the ups and downs life throws your way.

Shaken to the core, I want to vomit, scream and run away all at the same time. But there is no escape from me. I'm trapped in my body with this cancer that flows through my veins. My heart takes a deep dive and cries out for my kids, my husband, my family - I don't want to leave them, I'm not ready for the great separation, not in one year, not in five, not in ten - it's all too soon and it feels like it's closing in so fast. I wanted 30yrs or more and now the gravity of a much earlier passing is pinning me to the ground.

My Only One

I have only one place I can go when the wheels come spinning off like this. Only one place where I know I will receive the fullness of comfort and care I need. There is only One I trust implicitly not to hurt me further, to fully hear me, full hold me. There is only One who can take my pain, my burden, my desperation and exchange it for a peace that transcends everything.

And so, I get raw, I get honest, I get vulnerable with Jesus; snot, tears, arms outstretched in a deep yearning, with all my expectations and hopes set on Him alone. And, always good to His promises, He responds with powerful peace. With eyes closed, I sense Him step up in front of me and place his hand on my forehead. And then a rush of power courses through my body, physically shaking me. It goes on and on and on, time becomes irrelevant as I feel the heat in His hand flow through me. I don't question what He's doing, I just stand and receive. I know I have nothing to offer, nothing to say; all I can do is invite Him into this space of wrestling and uncertainty and simply believe.

And in that timeless place, in my spirit I hear Him say: "Peace I leave with you, My peace I give to you; but not as the world gives, so do not be trouble or afraid"

Powerful Peace

This was not a floating, feather-like peace; this was a powerful peace. Full voltage. Shaking out all my fear and foreboding. Transforming my mind and heart. Aligning my spirit with heaven. This was an exchange. All of me my heart, for all of His heart. Thank you Jesus.

In the days following this encounter, whenever anxiety started to creep in, I would turn my mind to remember His touch on my forehead, and I'd feel Peace press into those dark places and fight for me. And I'd be released from the fears that tried to imprison my heart and head.

Not every day since has been a breeze. There is a place for lament and grief. Jesus himself sweated blood and cried out in his darkest hours. But I'm not held captive by the darkness. I have been given an exchange card which I can redeem at any time. It's not like a gift card we'd get in a shop - it doesn't have an expiry date or a cash cap. It's limitless. It is the peace that only Jesus can give.

Courage, Love and Legacy

My relationship with Jesus is the rock that holds me through the storms of life. I have a bank of experiences that I can turn to, call on, that remind me of his steadfast faithfulness; never once has He ever let me down. This is the legacy I want to leave for my children, so that when life throws them the inevitable grenades, they have a safe place to go to, to find peace, love and comfort, to find grace and hope and strength.

Where do you go to find your strength and peace in times of turmoil?

When everything is kind-of okay in our worlds "good" is an easy response that just opens up further conversation depending on where we are, who we're talking to and what's on our minds. We're not usually listening for the answer or wanting to unpack complex emotions. Our expectation is that we are all "good."

But what if you're really not good? What if all is not well? What if your world has been turned so upside down and backwards that the simplest of common courtesies throws you into flight or freeze mode?

Of late I have been finding this question really difficult to answer. "I'm good" feels so inadequate, so untruthful, so fake and flaky. But to go deeper - is anyone really ready for that in those passing social moments? My general response now has diluted a bit to "I'm okay/alright" and depending on the person I might expand or I might not.

Powerful Discomfort

When I sat in the specialists waiting room for the first time, I remember hoping & hoping he wouldn't start with "How are you?" Asking someone how they are when they are about to receive a life changing verdict is not helpful. And thankfully he didn't. He just dove in with a statement of appreciating and seeing my situation in it's fullness and intensity "this must be really hard for you" or something like that. It felt so validating that I didn't have to mumble and stumble over awkward platitudes; I could grasp the opportunity he presented to express how I was really feeling. And that meant so much.

I have also appreciated friends and family who are willing to step into that sacred space of pain and purity and purpose with me. It's not comfortable, but it's powerful. Being willing to ask "How are you really?" and being prepared to hear and feel and lean into the complexities and ambiguity and wrestling that is happening in my heart brings a deep and enduring connection. When we can be there for each other in that capacity, that is a pinnacle of relationship that is often by-passed for the easier, more comfortable paths. But those mountain top experiences, the roads less traveled, are often the more rewarding.

Inappropriate Occasions

This weekend I'm heading to my brother-in-laws wedding - one we've been anticipating and looking forward to for so long (yay!). And then on Tuesday I have my next specialist appointment to receive my results from the genetic tests and CT scan. How am I? I'm apprehensive; I'm worried; my sleep is broken by regular nightmares; I find myself crying on the kitchen floor an awful lot; I'm imaging my own funeral in my head AND I keep doing life, I am grateful for every sweet moment I have and am sowing as much love and care and peace into my family as I can squeeze into each day.

Do I want to go into all that at a wedding? ... No, not really. It's probably quite inappropriate right? But there lies my dilemma - how do I respond to the multitude of well meaning but so hard to answer "How are you's?" by family, relatives and friends over the course of this special occasion? I trip over "I'm good" so what else can I possible say that's going to be okay?

I've been playing this one out in my head and heart over the last week, mentally trying to prepare. And then epiphany! A solution from my Nan (who died last year of cancer). She always had the sweetest way of responding to the "how are you?"question: she would reply "all the better for seeing you dear." Thanks Nan!

"All the better for seeing you" offers an artful, graceful deflection that celebrates the gift of time that is about to be shared between us, acknowledges my appreciation of them in my life and presents an opportunity to focus on their journey rather than dive into my own. Let's see how it goes.

Courage, Love and Legacy

When you are diagnosed with cancer, simple things that are considered so normal and by-the-by can suddenly become awkward and even challenging hurdles to navigate. I'd never even really considered the How are you/Good conversation opener until now. And suddenly there it is, at the start of every interaction and multiple times a day I find myself at a complete loss. For those not wrestling with life and death realities, it probably seems so insignificant and contrary, but, right now, for me, it's not. And that's okay.

There's no book that can tell us exactly what things will trigger us on this journey; there's only our personal reactions and responses and our willingness to feel them out, unpack them and be prepared to have the grace for ourselves and for others as we navigate this new realm.

Today I'm thankful for my Nan's legacy - her gentle words, which I've heard all my life, and now provide me with the love and courage I know need in the days ahead.

Feel free to share what "normal" things have you suddenly found harder to handle in your life post-diagnosis and how you might have navigated those challenges.

In 2015 I was in Vanuatu to facilitate an oral health conference with both local and international stakeholders. But, even before I flew up there from NZ, a huge weather system was predicted to wreck havoc on that small island nation. That system became known as Cyclone Pam and was one of the biggest cyclones to ever occur in the Pacific. It reached 896Pa (very low!) and had sustained winds of 250 - 280km/hr (very wild!).

In the days leading up to it's arrival, we watched the swirling colourful lines on windy.com become brighter and bolder and larger. The weather got more and more humid. The animals stilled with expectation. The breeze turned from gentle, to swaying to ferocious. We tried to go about as normal, do what was on the daily task list. But, in the back of my mind, a significant threat was lurking. Huge and overwhelming, this impending doom was nicknamed by media as a "monster storm" and we were told it was going to be bigger than Cyclone Katrina.

On the morning of the 11 March 2015 we opened our conference and welcomed our guests. Just before midday, we received a government issued red alert. Find immediate shelter - the cyclone is imminent.

I had to stand in front of friends and colleagues and inform them that the nation we all loved was going to take a direct hit from Cyclone Pam. As I stood there, holding back tears, I did not know, when the dawn rose the next day, how many of them would have their homes, their livelihoods, their lives. Needless to say, it was a sombre farewell as we all went to find a refuge to endure the night ahead. I remember a conversation that day, where I likened waiting for this huge cyclone to make landfall, like living with a terminal illness - an all consuming dread of the unknown force sweeping over our lives.

This week (Feb 2023), another cyclone (Gabriel) has caused horrific damage to people and property, this time in NZ. And this time, as I watched that whirling colour wheel descend from the north onto our little country at the bottom of the Pacific, I was reminded of Cyclone Pam and of my cancer comparison and reflect on the similarity of feelings and experiences bound up in facing a significant, destructive, indeterminate threat - let me extrapolate...

Anticipating the imminent

With this weeks cyclone, as with Cyclone Pam, as with CLL (& maybe other cancers as well), I've noticed how the imminent arrival of impending doom captures our focus, our feelings, our fears.

• The closer "it" gets - the heat increases. With a cyclone it's the humidity. With cancer, the tension becomes palatable.

• We become focused on the graph, the data, the tracking map. We wait for our next blood test, scan - hoping the track map is going to go the other way, and when it doesn't, we are forced to either make provisional plans to survive or completely ignore it.

• We try to go about daily life until it hit's, but the threat is there, in our consciousness, a storm is coming, be it today, next week or next year.

• And there's the massive unknown factor that's hard to comprehend or imagine. We don't know what the actual experience will be like, we don't know what the fall out will be, the damage, the aftermath, the death toll. We're facing a raging "monster" that's heading to our shores and there is so much we can't fathom about it and what it's going to do to our lives. We don't know how we're going to respond. All we can do, is watch and wait and prepare for impact.

The impact zone

And then it hits, in it's wild furious ferocity, and it's not as we expect or anticipate, because we've never been through it before, so how would we know?

• Cyclone Pam ripped every leaf off every tree, threw corrugated iron around like it was paper, buildings collapsed, homes were destroyed. It crept in slowly, steadily, took it's sinister time as it ravaged an entire nation and all it's inhabitants. Cancer too can so often grows slowly, consuming our bodies and our health, little by little. It has the potential to completely overcome us, wrecking havoc inside and out.

• That night in Vanuatu, people called in with songs for the radio. "My heart will go on" by Celine Dion pulled at everyone's heart stings - there was deep mourning and sense of grief as we wondered if we too were on a sinking ship? I've stood beside my mum, my nan & grandpi, mother-in-law, and close friends as they mourn the impacts of cancer and it's treatment on their appearance, their health and their futures. Mourning is needed and necessary, whether or not we survive, things have changed and grieving is a natural part of the process.

• And then the power went out. We were left in complete darkness, isolated. We could feel the pressure - it was the strangest feeling - I got the shakes, others had nausea or headaches, as we entered into the deep deep low pressure of the system. We couldn't see but we could hear it: it was like we were standing right up against the turbo jets of a 747 airplane - it's force punctuated by almighty crashes as unknown objects were smashed by the raw fury that surrounded us. The sound of water lashing from the heavens. And as it rained a waterfall inside that night, the women I shared my haven with, pressed into each other for comfort and care. Sometimes the time for thinking, planning, knowing is gone. And we have the opportunity to draw on our other senses. What we feel, what we hear, what we touch. In the darkest part of the night, it is those other senses that help us navigate our way to the dawn.

• And you know what, people did not stand by and cower as Cyclone Pam made landfall? They did everything in their power to protect those they loved. Families ran from refuge to refuge seeking shelter and safety. As whole communities congregated in the last remaining refuge of a village ripped apart, the men and women would literally hold the roof on as the wind sought to tear it from them grasp and expose their children to the dangers all around. They were not passive. They stood up and stood strong. As do so many diagnosed with cancer. We make health changes, we choose activities to strengthen our mind, bodies and spirits. We press into our communities for strength and support. We don't give up, we do not cower, we hang on tight.

The Aftermath

• And then it was morning. And the wind abated and we could take stock. Out on the street, people marched down the middle of the road, whooping and yelling - adrenaline pumping joy - we have survived! We had overcome! We were alive! When we overcome cancer - whether its a fleeting victory or complete remission, we celebrate! We are alive to live another day. Exorbitant thankful joy!!!

• Vanuatu, with it's scattering of small isolated islands, was a remnant of what it had been; everyone knew it was going to be a long road to recovery. The rebuild was going to take years. No country survives a grade 5 cyclone, no person survives a cancer, without a huge recovery effort being required. It takes time to recover from the physical, mental and spiritual impacts of cancer and its treatment. It doesn't happen overnight, but step by step, day by day, year by year, regeneration occurs.

• And out of the devastation, resilience bloomed, grew and thrived. I was personally able to get involved with a number of recovery and rebuild projects and admired the fortitude, resolve, courage and stamina of the island communities. We celebrated the strength of connection and community that underpinned the entire recovery effort. Humans have an incredible spirit to rise from the ashes. I've had friends and family both die of and survive cancer and they are some of the most courageous and strong people I know. Although none of them would have invited cancer into their lives, some of the most precious, connected, treasured moments have happened during or after their diagnosis.

• When I first arrived home to NZ, I looked around with different eyes. I remember sobbing after going to a tea party where the cupcakes had exquisite icing and I thought it was so damn wasteful and extravagant. My life and outlook had gone through a seismic shift, one that other people around me really didn't understand. My priorities and values were changed. How and where I spent my time and resource. What was important, what wasn't. Cancer too offers us the opportunity to reflect on our values, priorities and time and make adjustments where necessary. It calls into question our sense of time and provides us some very real limitations. We can cry over the icing on the cupcake and we can choose to use this energy to motivate us in ways that bring positive purpose to our days.

Courage, Love and Legacy

When there is an imposing threat on our horizon, when it hit's our shores, when we find ourselves taking stock in the aftermath, we often discover a shared inner strength, unity and fortitude we didn't know we possessed. Read the headlines days after any tragic disaster - it is the people coming together, working together, supporting one another that has everyone talking. The compassion, the kindness, the generosity of humanity. How people pull together, put differences aside. This beautiful and profound human spirit was what I saw first hand in Vanuatu after Cyclone Pam. This is what I have experienced within my own community after my diagnosis. This is what I have witnessed with friends and family as they face treatment and the aftermath. The darkness of a disasters of any kind, whether national, local or personal is also where the light of love shines brightest. Today take some time to reflect and be thankful: where is the light and hope amidst your current storm?

So many questions???

In the days leading up to the appointment I was lost in a land full of questions on just about everything. Me, being me, I systematically downloaded them from my head into a neatly organised word document ... printed... and hole punched them into my new file labeled "CLL"...

• I wanted to know why I had been given a specialist appointment so quickly after diagnosis: Did it mean it's bad? Were they just being cautious? Was I lucky or unlucky?

• I wanted to know how to interpret my bloods so far: What did he think of my WBC? What was he concerned about? What about my progression from no sign of it 15months before?

• What about prognostic testing: Could I get a FISH test? IGHV mutuation? 17p deletion? B2 Microglobin? Were these tests even available in NZ?

• And about my age: How many other patients does he work with in my age bracket? What have their journeys looked like? Did any of them live for 30 years?

• I wanted to know about getting sick: What are the warnings signs of progression and when should I act? What is the concern about night sweats? Am I at greater risk of infection now? Am I already immune-compromised?

• And about treatment: Statistically how soon am I likely to need treatment? What types of treatment do we have in NZ? How much time do they buy? How might I access clinical trials?

• I even wanted to know about dying: If I never had treatment - what could I expect the dying process to look like? Infections? Low oxygen? Low iron? Low platelets? Other cancers?

• And then the questions I wasn't going to ask: Would I trust him? Would he be empathetic or stoic? Would he dismiss me or connect with me? Would he talk in doctor speak that needs translation or down to earth that I could understand?

Poor guy - I'm not sure he was used to CLL patients rocking through the door armed with a folder full of research and questions! Thankfully he was amazing and totally took me in his stride.

An answer to prayer

Even though he couldn't give me an answer to every question that was swirling around my head, his manner and responses provided the comfort and care I was actually looking for.

The first thing he did was acknowledge that my diagnosis was unusual and I was not one of his regular 70yr+ CLL patients, so our journey together would be very different. This validated everything I was feeling and as we dove into that conversation and its implications, he was both sensitive yet pragmatic, positive but not unrealistic.

After eye-spying my folder, he invited me to share what I knew. He did not get all professional/superior on me with my google research as I bumbled and cried my way through my findings.

Instead, he listened attentively and then gently guided my interpretation of information with his knowledge and experience. The highlight was when he reassured me that the data and research I was using to inform my understanding of prognosis started 30 yrs ago - which meant current overall survival statistics would generally be longer based on new medicines available (yay!)

As we talked about prognosis and treatment, he made no promises (very wise), but kindly proposed it was his intention to be with me until he retired (and given he's roughly my age, that's a decent length of time to walk it out with me). I really appreciated that he recognised the importance of continuity, care and relationship without me even having to ask.

He removed some of the severe limitations I had been imagining would come with CLL. I thought I may never be able to go and work in developing countries again because of the health risks but he said when those opportunities came, he'd work with me to make them possible.

And as we wrapped up, he again validated my feelings - noting that the CLL journey was in some ways different from other cancers and, because of it's longevity, could be quite emotionally and psychologically challenging.

Letting go of the need to know

As we drove away, I felt relief. I could trust this man to care for me and my family. I could trust him to make good decisions for my future health. I knew I would feel safe having conversations with him as the journey takes its twists and turns.

When I had entered the cancer clinic, I wanted to leave with bookings for monthly blood tests so we could start getting detailed data on my progression. By the time I left, I was comfortable with his recommendation of 3 monthly tests to save the emotional turmoil of more regular check-ups and I was able to let go of my need to know. And with that, all those other questions I'd been wrestling with also let go of their grip on me. I was ready to watch and wait.

Courage, Love and Legacy

I feel more than blessed that the first specialist I met with about CLL presented the perfect blend of personal and professional, astute and consideration, emotionally sensitive and clinically qualified. I have experienced other medical professionals who are not like that at all, so am aware of just how fortunate I am. I've highlighted the qualities my hematologist demonstrated that made me feel safe and cared for, so that hopefully you too can identify what you need out of your medical team and those responsible for supporting you on your journey.

What are some of the characteristics you look for/appreciate in your specialist? - feel free to comment below...

Shock and Denial

I began my cancer journey in shock. There was a sense of numbness and a self-protective detachment from my feelings (probably because they were too intense to deal with). I kept on trying to do normal things (pretty unsuccessfully) because the news hadn't fully sunk in yet. In the first week or so I mostly told everyone I was all good, this was just another opportunity to learn and grow and strengthen my faith. I did my research, I waited for my flow tests results, I attended doctor appointments - but I compartmentalized. I kept a space reserved for this, but I did not allow it too much space in my conscious.

The Vortex of Despair

And then, as the days and time allowed my reality to sink in a bit deeper, I felt myself despairing. Undone by confusion, uncertainty, fear.

I started to entertain thoughts that I would most definitely have all the worst prognostic markers. People say this type of cancer is chronic, but for me it wouldn't be. It would be quick and unresponsive to treatment. I started imagining all the sicknesses I would suffer as my blood was consumed by mutant white blood cells. I started to imagine dying. Soon. While my children were too young. Leaving my husband alone. What it would be like to say my goodbyes while hooked up to some kind of machine beeping for me? I started to feel everything in my life was hopeless. I started wondering if it would be better to finish the race now rather than have to live in a game of Russian roulette for the next 10 years. At least then everyone else would be free to get on with life; without me.

I love making plans. I love having things on the calendar to look forward to. I'm intentional with my time and I like it to count for something. Now, as my emotions spiraled, I felt I had no time left. Could make no plans. Had nothing to look forward to. Because there was nothing I could cling to with certainty in the future, I started filling in the blank space - with all the worst case scenarios. Tell me all you like CLL is chronic & treatable - my mortality still hit me like a tonne of bricks: I'm too young, I'm not ready to die.

Rock bottom

One miserably low evening I just sobbed and sobbed, trying to explain to Anton how helpless and hopeless I felt. How everything in my world was literally unraveling. That my world had just caved in completely. How I had no strength, no fight, no will, no determination to pick myself up. That I just needed to get off the train for a bit. In the film world, this moment is called the dark night of the soul.

Anton knew that and just held me. Sometimes there are no words for another persons pain.

Processing

And in a film, after the dark night of the soul, a new dawn breaks and we break into Act 3 - the momentum toward redemption! The next morning, from my collection of cancer pamphlets, I pulled out a small buried one which generously offered a retreat for patients and their carers. When I had first read it, I had put it aside, telling myself I wasn't sick and wouldn't be needing that. But now I knew I needed the opportunity to get away from my life and responsibilities so that I could process this properly. Before imposter syndrome got in the way, I emailed them and within a week, we were off for a weekend to a beautiful spot to let ourselves really talk, really feel, really unravel, so that once the pieces were all on the floor, we could consider how to put them back together again.

Acceptance and Hope

Then hope and faith arise. Around that time of retreat and reflection, the idea of this website was born: Courage, Love and Legacy. A way for me to start accepting this new reality, construct something positive around it and create an opportunity to find and offer hope. Refreshed and renewed I found strength to reconstruct my CLL diagnosis and begin to accept its impact (good and bad) on my life.

Courage, Love and Legacy

Any kind of cancer diagnosis is likely to leave us reeling. We will all go on this journey of grief and loss differently. And it is a grieving process because things have changed in our world. Things have changed in our body. We're having to let go of stuff, hopes, dreams, plans, and expectations. New and unexpected limitations have been introduced to our life. For some treatment is imminent. For others it might be years off.

It's likely that as we progress through the journey, we'll end up back here, unraveling again at different times. I don't expect to ever get the hang of this completely. Just like if we loose someone, even years later, we can suddenly find ourselves crying for the loss of them in our lives. I imagine I'll find myself here again when the inevitable blood test shows accelerated grow of my white blood cells; just like a new sign of cancer after years of remission would for someone else.

Recognising where how we are feeling at any given moment can be really helpful as we process loss and grieve. When our emotions are in the drivers seat they can take us anywhere, sometimes into very dark places. When we notice them and name them, we can take back the wheel. When I sat in my dark night of the soul and told Anton I felt hopeless and helpless and needed a break, that's when I realised I needed a break! When I noticed and named how I felt, I found a need. And that was one thing I could do something about.

Wherever you're at on the journey, take a minutes right now to just sit with your feelings. How are you feeling right now? Notice it. Name it. Consider what you might need because of that feeling. And then I'd challenge you to share it - with a friend or with me in the comments below.

I was finding this cancer curious, because the response to it is not to treat but to watch & wait and that was not something I had any understanding of. (my mum, mother-in-law & friends have all survived cancer and watch & wait was not in their treatment plans). I needed to understand what that looked like on the ground, where the rubber meets the road.

Before we go into what I discovered, let me back up a bit to something I learned long ago when asking for information...

Half empty/ Half full

People can be so quick to share bad news stories, negative facts, worst case scenarios. It's an inherent bias we live by for some reason. You only have to pick up any kind of news media - its all angled to alert and alarm. Gets readers right?

I noticed this really tangibly when I decided to have a home birth during my first pregnancy. My very good friend delivered three beautiful boys at home and she encouraged me to trust my body, trust the process. I was so inspired and excited, that is until I started telling other people my choice. Whoa! Man did everyone want to fill me in with the risks, the mishaps, the horror stories! I had to get really good a boundaries and asking people to keep their personal opinions and stories for someone else who might be interested in entertaining nightmares.

Since then I've worked in community development in the Pacific and dedicated an entire programme to reframing how we define what we have in our communities based on the analogy of a half empty or a half full cup... it is a matter of perspective, it's a matter of choice and of focus.

We all have a cup and it's both half full and half empty. What gets our attention directly impacts what we're building. It's hard to build a vibrant community when all one sees is lack and problems. Success is far more likely when we celebrate the abundance, strengths and resources found within.

This is a value and perspective I try to carry into every area of my life.

Seeking Stories of Hope

So with that in mind, let's get back to my story about reaching out to the world wide community of people living with my curious type of cancer:

I was aware that how I framed my introduction would very much determine the kind of responses I would receive. I was also very aware that the information I asked for would be the building blocks that I invite to frame my life from here forward. Did I want the dismal, sad and despairing stories (because if I look, I'm sure to find them), or was I seeking stories that would bring me and my family hope? Give us a solid foundation to build from.

Taking a deep breath, I jumped in, joining a couple of Facebook groups. "Surviving and Thriving with CLL" seemed like a positive place to start and also one for people my age sharing this diagnosis.

My first post read: "Really keen to hear from people that have lived with this for many many years! I wanna be there for my boys into their adulthood and want to build a knowledge foundation of CLL on stories of hope. Love to hear from you!"

Hope from faraway friends

The feedback I received felt like a blanket of comfort was wrapped around my shoulders and the sweet scent from a cup of hot chocolate and marshmallows filled my senses.

So many beautiful people shared their stories of hope - which is what my family and I needed most:

• I was diagnosed in 2013, and 10 years on, I haven’t needed treatment yet.

• I was diagnosed on my 40th bday. Had 6 months of treatment. I’ve been in remission for over 7 years now.

• 18 years. I just live my life.

• If it gives you any relief I have been on watch and wait since 2010 and am now 63

• I've had CLL for 13 years, diagnosed in my 30s. So far, I have not needed any interventions.

• I've been W&W for about 12 years.

• I was diagnosed at age 37 and my sons were around 10 and 8 at the time. I am now 48 and in full remission.

• I was diagnosed 10 years ago, had treatment and am living a full active life.

• Diagnosed a couple months shy of 43, still in W & W at age 54.

• Please have hope. I was diagnosed 23 years ago at stage 1 and had symptoms when I was younger than you.

• I was diagnosed at 30 while pregnant with my third child who will be 20 tomorrow!

And like a loving family who just want everyone to feel safe, others shared advice and encouragement:

• We've learnt you can still have a good life

• Just relax, and live life as normal, there are a lot of us on W&W for years.

• I hope you stay in watch and wait for many years like me or have those long remission after treatment like above.

• Ask lots of questions of your doctor. See a CLL specialist.

• Try not to worry, there are lots and lots of reasons not to!! Hang in there and feel free to reach out any time.

• Stay positive, be brave and ask lots of questions. Each journey is different with CLL, but we make it!

I read out each comment to Anton and the boys and felt our spirits lift as we sailed on the stories of others. This is not a club I'd choose to join, but the warm welcome was tangible and appreciated.

Courage, Love and Legacy.

Usually online group networks scare me: so many people just rant and rave and throw negative, hurtful punches all over the place. But on the CLL networks I have joined (see about CLL page for a list), I have found people to be kind, caring and courteous. Everyone is there to help. There you will find a network willing to encourage, love and inspire you on the journey. We need connection, hope and understanding and it's uplifting to find others who are on a similar journey and can appreciate our highs and our lows. It is a big extended family of people - not linked by biological blood, but blood brothers & sisters all the same. And it's beautiful.

If you need a cup of hope (or hot chocolate) today as you absorb a cancer diagnosis, I'd encourage you to reach out to and connect with others and ask them to support and uplift you. And feel free to ask for a bit of love in the comment section below.