Category: Journey with Cancer

I’ve just passed six months of daily chemo. That’s eight tablets a day, four with breakfast and four with dinner, seven days a week, totalling 1456 tablets. A friend recently shared with me that my silence on social media had made her anxious that perhaps I wasn’t doing too well. So I figured that it was time for an update.

Health-wise, I’m doing pretty well, thanks. The chemo seems to be doing a good job of shrinking and keeping the cancer in check. My last scans showed no observable changes. No change is good with this treatment strategy. It means that the drugs are stopping the cancer from progressing. And probably better than that.

I’ve grown use to most of the side-effects. Seems I’m now allergic to sunlight! The drugs make me burn very quickly and I’ve had to invest in hats, long sleeve shirts, and carrying a small pack of sunscreen with me. This has been kind of weird for someone who has just moved to the beach! I’ve been experiencing fluid retention, swelling to the feet, and muscle myalgia, especially in my legs. I’ve put on weight, gained the alectinib belly, and felt rather bloated a lot of the time. Chemo brain has returned and I find myself forgetting things, but what’s really bad is that chemo brain has returned and I find myself forgetting things. My resting heart rate has dropped over 20bpm to the rate of an elite athlete—except I’m not. When it gets really low (mid 40s) I find myself feeling totally smashed. Fatigue is a big issue for me now. But, I’m alive, getting on with life, and the cancer has been dealt a blow for now. Thank you God.

2020 marks a lot of changes and they’re not fully worked out as yet. Technically, I’m unemployed at present. My work with FIEC has finished and I’m waiting for our local church to work out a firm offer for me to pastor with them. My plan is to work with Salt Community Church at Bonny Hills, and run for President of the US in my spare time. (Did I say that chemo brain makes me think weird thoughts?) I’d love to keep active in ministry, take up opportunities for sharing the good news of Jesus, speak on Hope Beyond Cure, and perhaps move into doing some mentoring/coaching of pastors.

I’ve got a few personal goals. Trying to lose 10 kilos—4.8 so far in 2020. Getting back into writing. Travelling the Great Ocean Road with Fiona—in a couple of weeks time. Taking regular days off—something I’ve struggled with the past 3 years. Our son, Marcus, is studying in Indonesia, so we’d also like to pay him a visit sometime this year. I’ve got a few more goals, but I’m not overly ambitious. Mostly, I want to love God, love my family, love my church, love my friends, and share the love of God with others. I’m not awesome at it, but I know God works through my weakness and failures to bring about his good purposes.

We spent this morning at the funeral of a friend’s mum. She died at 64, leaving a husband, 4 kids, 10 grandkids, and so many friends. The church was packed, the overflow was packed, and it was standing room only outside. We’d been to the church before and it was all but empty. I’m talking single figures of regular attenders. Today there were literally hundreds.

Church mattered today. People flooded the building. People engaged with spiritual matters. They prayed the Lord’s Prayer. They recited the 23rd Psalm. Today God was on their agenda.

I thought to myself, “Why are we normally content to mindlessly fill our lives with trivial pursuits?” “Why do we drift toward death, without pausing to consider what life is all about?” “Why does it take the death of someone we know, love, care about, to cause us to stop and think about matters that really matter?”

Today is exactly eight years since my cancer diagnosis. Eight years I never expected. Eight years of lows, highs, and everything in between. Eight years of being personally plugged into my mortality. Eight years of continual reminders that life is brutally short. Eight years of growing, deep conviction about the meaning of life and the purpose of existence.

Is it all blind meaningless chance?

I don’t believe so. I’m persuaded that there is a God behind it all, that he can be known, that he is good, that he gives hope, and that hope is real.

What do you believe?

And why?

My new targeted chemo regime is now in full swing. So much easier than the previous routine of hospital visits, IV chemo, crash for a week, regroup for two weeks, then do it all again. Now it’s just four tablets with breakfast and four with dinner. Instead of a chair in hospital, I can sit on the deck at home.

This week I had my first CT scan since starting treatment and the results are exciting. The drugs are working, the cancer is shrinking, and life is stabilising. The pain has all but disappeared, the coughing has gone, and my breathing is getting easier. There’s increased fatigue, some aches and pains, my heart has slowed down, and my brain has become a bit muddled at times. Latest blood tests show that I am tolerating the impact on my liver and other organs. The breathing is getting easier and I’m keeping fairly active.

Thank you for your concern, your prayers, and your encouragement. I’m very grateful for God’s kindness in giving me a renewed lease on life. God has put a smile on my face and an increased desire to number my days for his sake. It’s not a cure, but it sure is good.

It’s December 2nd—my seventh anniversary since diagnosis. Wow! A few tears fill my eyes. This is real. And it was never going to be. Life was over. It was all downhill. There was no hope. Expectations were gone. And then…

To be alive. Intoxicating. Blessings. Fiona. Luke, Sharon, Matt, Liz, Grace, Sid, Marcus, Liam, Connor, Jesse, and the little one we are yet to meet. Family. Friends. Brothers and sisters in the Lord. Friends with cancer. Deep bonds.

Ministry. Work. Travel. Beaches. Lessons. Blessings. Opportunities. Words. Writing. Speaking. Listening. Learning.

Father in heaven, thank you for life and living. Thank you for health and possibilities and a future.

And forgive me. Yes, forgive me, for unlearning. For once more taking breath for granted, for my growing sense of entitlement, for pride, for becoming casual and flippant and attracted by trivia. 

Father, you have taught me so much on this journey with cancer. You have been with me in the valley of death, you’ve carried me through so many trials and temptations, you’ve been merciful beyond description. You have taught me lessons, encouraged my faith, and disciplined me in my wandering. You have comforted me, that I might comfort others. 

Father God, you have adopted me into your family, you have redeemed my life through Jesus, you have filled me with your Spirit. I can never thank you enough. You have reminded me that I’m not self-sufficient and shown me the your sufficiency of your grace. Thank you that my life is in your hands and teach me to number my days once more.

For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
How precious to me are your thoughts, God!
    How vast is the sum of them!

(Psalm 139:13-17)

God works in mysterious ways.

A fortnight ago I boarded a plane for Sydney in order to speak at the Managers Conference for Koorong Books. They wanted me to speak devotionally and to share about Hope Beyond Cure. My plans had been to shut my eyes and add a little sleep after what had been a very busy fortnight in New Zealand. But it wasn’t to be.

The woman in the seat beside me asked what I would be doing in Sydney. I replied that I was planning to speak at a conference about ‘How to find hope in the face of a terminal diagnosis’. At this she choked up, and began to share with me that her husband had died only weeks before. Her grief was palpable as she described the heartache and devastation on her family.

She asked my how I came to be speaking on this topic and I shared that I’d received a terminal lung cancer diagnosis a few years back. We talked for a while and shared a connection through the heaviness of our conversation. I wanted to be able to offer her a copy of my book, but I didn’t have one with me. Why would I? I was off to Koorong Books!

As the flight continued, we talked through many shared experiences. I told her of my struggle with cancer and also the challenges to my faith in God. As I described the context of my circumstances, something clicked for her, and she asked me whether I had written a book.

“Yes”, I said.

“Is it just a small book?”

“With a black cover?”

“With a picture of someone in a tunnel?”

“Yep, that’s it”, I said.

When hearing of her husband’s diagnosis, her aunt had sent her a copy of Hope Beyond Cure, which she then read to her husband each day in hospital. They both found it encouraging and hope-filling. She said that she wasn’t religious, but something deep struck a chord with them.

She wept at the serendipity of sitting beside me in the plane. Who’d have thought? What were the chances? She asked if we could get a photo together to show her aunt. She lives in Victoria, but her aunt lives close to us and works in the local Op Shop. I’ve since popped into the Op Shop, met her aunt, and thanked her for sending the book.

I continue to thank God that this book is helping people. And I thank him for connecting the two of us on the plane.

You know I’m a Christian, right? So BC and AD to me reflect the most significant events in human history: BC—before Christ and AD—anno domini (in the year of the Lord). It makes perfect sense to me to divide our calendars at this point.

So it is with humble respect that I claim another BC and AD hinge point in my own life. BC—before cancer and AD—after diagnosis. And today I reach 6AD. Today is my six year survival mark. It’s exactly six years since my friends ushered me from the coffee shop to the cancer journey. On 2nd December 2011 I was admitted to hospital and today I begin my seventh year of life AD.

Yesterday I had the privilege of catching up with the same blokes who cared for me on that first day. As we have done every year, we drank coffee (or chai lattes and hot chocolates—we’re getting older), we shared stories, and we prayed for each other. Much has happened in this time. So much has changed. But the goodness of God remains. As I drove home, I found myself singing (yes, truly—and I believe I was even in tune!)

Through many dangers, toils and snares
I have already come
’tis has brought me safe thus far
and grace will lead me home

There have been so many dangers, toils and snares, and I am so conscious of God’s grace in all of them. God’s abundant kindness and mercy astound me. All of my bucket list prayers have been answered. I’m not supposed to be here—the doctors said so. And yet God has given me more days in this life to sing his praise.

But, you know, it’s not about me. The original BC-AD divide leaves my personal experience deep in its wake. The coming of Jesus Christ offers us forgiveness, life, and reconciliation. The sting of death has been removed. Hopelessness and despair have been replaced by joy and assurance. I can look forward in confident anticipation to an eternity with my saviour, not because of anything on my part. No, it’s all of grace, amazing grace. The same grace that transformed John Newtown, and William Wilberforce, and millions of others throughout the centuries. And you too can know this grace.

I lay alone in my hospital bed, the words and music of David Bowie filling my headphones…

Pushing through the market square,
So many mothers sighing
News had just come over,
We had five years left to cry in

News guy wept and told us,
Earth was really dying
Cried so much his face was wet,
Then I knew he was not lying

We’ve got five years, what a surprise
Five years, stuck on my eyes
We’ve got five years, my brain hurts a lot
Five years, that’s all we’ve got

Five years
Five years
Five years
Five years

I wept to the music. Five years seemed so far away. A future I would never experience. A very remote possibility at best.

I’m listening to it again now. Bowie has gone. Another lost to cancer.

Five years is a landmark for those with cancer. We measure the statistics for five year survival. Early detection increases the odds. Isolating the cancer and effective surgery seem the keys to success. Sadly, many cancers are detected late. Symptoms go unrecognised. Patients and doctors assume there must be a simple explanation. It’s only a cough. You’re probably just tired. Don’t make things worse by worrying about it. You’re just unfit. The blood tests seemed good. The x-ray didn’t show anything. You’ll be over it in no time.

Lung cancer is too often diagnosed too late. Many of the symptoms resemble a common cold or flu. And, if you don’t smoke, then why would you even contemplate the idea of lung cancer? Late diagnosis takes options off the table. If it has already spread, then surgery is normally not an option. A stage IV diagnosis is considered terminal. Metastatic (spread to other organs) lung cancer requires a chemical strategy, but it’s not considered curative. Until very recently this was only chemotherapy but, in many cases, this is now moving to targeted drugs that work on the cancer at the genetic level. Another frontier is immunotherapy that strengthens the body’s own defence system to attack the cancer. Combinations of strategies are being tested. Cure, however, still seems a long way away.

In many ways five years is merely arbitrary, simply a number—like a cricketer who reaches a century, 100 runs. Statistics are only descriptors of what has been, not predictors of what will be. Nevertheless, five years is five years. It’s five years of life. It must not be taken for granted.

Cancer.org lists the five year life expectancy for non-small cell lung cancer. This is my particular cancer type. This is what people like me are told they can expect. It’s not pretty.

• The 5-year survival rate for people with stage IA NSCLC is about 49%. For people with stage IB NSCLC, the 5-year survival rate is about 45%.
• For stage IIA cancer, the 5-year survival rate is about 30%. For stage IIB cancer, the survival rate is about 31%.
• The 5-year survival rate for stage IIIA NSCLC is about 14%. For stage IIIB cancers the survival rate is about 5%.
• NSCLC that has spread to other parts of the body is often hard to treat. Metastatic, or stage IV NSCLC, has a 5-year survival rate of about 1%. Still, there are often many treatment options available for people with this stage of cancer.

So, you see, five years was a lifetime away. Five years was out of reach. Five years was a dream and a prayer.

Today marks FIVE YEARS since I was admitted to hospital and diagnosed with stage IV NSCLC. FIVE YEARS. FIVE YEARS. FIVE YEARS.

I remain NED (no evidence of disease).

It’s a year since I last had chemo.

Time to say “Thank you”.

I thank God for giving me life, forgiveness, a relationship with him, and the real hope of eternity. I thank God for giving me purpose in life.

I thank God for my beautiful wife—who researched options, sought the best care, stuck by my side, urged me on, watched over our family, worked hard to pay for my medical costs, prayed for me, and kept on going even while everything hurt her so much.

I thank God for my awesome children and daughters-in-law. I thank God that he upheld them in the brutal reality of their dad having ‘incurable’ cancer.

I thank God for my two beautiful little grandsons. Boys I never expected to meet, who bring me such joy.

I thank God for my father and mother, for their prayers, visits, phone calls, and compassionate support, while facing many difficulties themselves.

I thank God for my family and friends, who have suffered alongside my suffering and rejoiced in my progress and healing.

I thank God for my church, and my other church, and praying people everywhere who have taken the time to ask God to heal me and help me. It blows my mind.

I thank God for my oncologists, my nurses, my surgeon, my exercise physiologist, my acupuncturist, and my many helpers.

I thank God for my cancer buddies. Some I’ve shared with face to face, some who have not lived to see five years, some I only know through Facebook. I thank God for their friendship, their generosity, their tenacity, their compassion, their faith, and their hope.

I thank God for giving me Hope Beyond Cure and then giving me time to share this with others.

I thank God for my five years!

And, dear God, please can I have some more.

Since receiving my cancer diagnosis, many have assumed that my big questions are “Why?” and “What?” Why am I going through this? Why did God let it happen? What did I do to deserve it? What could I have done to prevent it? What specifically caused it?

The truth is that I haven’t been too obsessed with either of these questions. I’ve been more impacted by the questions “Where?” and “Who?” More particularly… “Where am I?” and “Who am I?”

Where am I?

When cancer hits, life shifts course. The journey changes for the worst. Our plans are detoured, deferred, or destroyed. We feel confused and disoriented, out of control and sometimes totally lost. We’re not where we want to be. We’ve got things to do, places to see, people to meet, tasks to complete, dreams to be realised. But we discover our course has shifted and we might never find our way back.

There is a blessing to be found when we discover we’re lost. It’s time to take a look at the GPS. Time to get our bearings. The truth is, we’ve never been in control and our destinations have never been certain.

In their hearts humans plan their course,
    but the Lord establishes their steps.  (Proverbs 16:9)

I need to let go of the belief that I can make my life happen the way I want. I need to humble myself before God and recognise that it’s his overall plan that will prevail. I don’t even know what will happen tomorrow, but I can know the One who does. I can rest secure in the knowledge that my detours and diversions can never separate me from the love of God.

…neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.  (Romans 8:39)

Who am I?

So much of our identity is tied to what we do and what we hope to do. Our jobs, hobbies, relationships, achievements, physical prowess, intellectual acumen, brushes with fame—they all make us into somebody. Yesterday I heard Usain Bolt say that winning the Olympic 100 metres three times in a row will make him immortal. If only!

Cancer can strip us of all that makes us who we are. Our dreams are destroyed and our hopes are dashed. Sickness keeps us from the very things on which we pin our identities. Who am I if I’m no longer an athlete, a lover, a worker, a success? Am I stuck being a patient, an object of sympathy, a statistic? Is my identity now shaped by my disease? Am I a victim, a survivor, a success, or a failure? It’s no wonder confusion reigns.

Again, there is blessing to be found in the moment of crisis. I need to be reminded that I’m not the sum total of what I think, own, achieve, say, or hope for. My identity isn’t something that I need to build for myself. God has made me in his image to reflect his glory. He has redeemed me through the death of his Son to be adopted as his child. I am richly blessed in Christ. God has given his Holy Spirit as a guarantee of a deep personal relationship with him and a glorious eternal future.

The Spirit himself testifies with our spirit that we are God’s children. Now if we are children, then we are heirs – heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.  (Romans 8:16-17)

Cancer cannot take this away from me. My identity is to be found in God, not in my circumstances. So long as I look to my circumstances, I will remain confused and lost. Far better that I keep my eyes fixed on Jesus.

…let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy that was set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.  (Hebrews 12:1-3)

Don’t fear the questions. Only look to God for the answers.

Someone contacted the church office recently, wanting to know if I was still alive! A fair question really—they’d read my book and suspected the worse. Well, despite my lack of blogging recently, I’m alive and enjoying the life God has given me.

This week I’ve celebrated my fifth birthday since diagnosis. And today my CT scan showed that I am still no evidence of disease. It’s over three years that I’ve been N.E.D. I’d prepared myself for bad news—somehow expecting that I’d have to change my name to E.D. But my results show no change. Thank you God!

Most of you will not know that it’s now nine months since my last cycle of chemo. It’s a real joy not to be poisoning myself every three weeks. Some of my regular side effects have disappeared. Others like fatigue, chemo brain, and anxiety continue. It’s been wonderfully liberating not having to plan my life around three weekly cycles of sickness.

Four years is a very long time to have non-stop chemotherapy. It’s tough physically and emotionally. It’s hard to keep getting poisoned when you are not sure if it is working or necessary. I was prepared to stay the course whatever, but a number of doctors raised questions about whether, after showing good results for so long, it might be worth taking an extended break. So in November last year my break began. I’ve had three scans in this period, and each one has show N.E.D. My break continues.

I described my circumstances to people the other day as like being in a battle zone. Through the years of chemo it was like I was wearing body armour to protect me from the enemy. At the beginning the enemy lines were clearly visible. After I became N.E.D. it changed to a fight against a hidden opposition—like terror cells that can pop up anywhere. I didn’t know where or when or how the enemy might appear, what shape it might take, or what it might do to me. My oncologists believed the enemy remained real and would seek any and every opportunity to attack. So the body armour was essential—I was urged to stay with the chemo indefinitely. The strategy was vigilance, protection, prevention.

Now that I’m not taking regular chemo, it’s like going out without the body armour. The enemy may or may not be present—there is no way to be sure. There are risks. The cancer may raise its head again. We cannot know. I’ve received mixed advice from the medical experts. They cannot tell me anything decisive. Scans are clear, but their scope is limited. Nothing microscopic will ever show on scans. Some say the cancer is still there—simply because they don’t believe treatment can cure my cancer. I’ve been described as a ‘super-responder’. My results are off the charts and there is no data out there to definitively advise me what to do.

So I will stay in touch with medical updates, clinical trials, and the latest in treatment strategies. I will keep talking to my ‘cancer buddies’ about what they are experiencing and discovering. I will continue three monthly CT scans and introduce six monthly MRIs of the brain. I will gradually increase my exercise and try to eat well. But mostly, I will remember to number my days, using the time that God has giving me to trust him and live for him. I will thank him for his saving love, for his gift of life, for the blessing of family and friends, and for the honour of praising him.

I want to honour my family for supporting me on this long and often painful journey. It’s been hard for them and I owe them a huge debt of gratitude.

Like my tee shirt?