1456

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.

IMG_4676I’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.

Eight years closer to eternity

rhodi-lopez-Cxpqnzd3Psg-unsplashWe 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?

Stepping down

fiecDear friends

I’m letting you know that I will be stepping down as FIEC National Director next year. It’s been a tough decision and a while in the making.

There have been a number of new stressors this year, most significantly declining health. My health problems reached a crisis point in June, when I was trying to function with constant pain, coughing, and breathlessness. Scans and biopsies confirmed that the cancer had been growing in my lungs and pleura. My poor health, fatigue, uncertainties, and stress, are among the factors behind my decision to step down. However, it’s not just the last year—it’s been eight years of living with the effects of lung cancer.

I now have reduced physical, mental, and emotional reserves, and I need to listen to my body and make some changes. While the pain and difficulties of the cancer have been reduced through the treatment, the side effects continue to limit me. I have increased fatigue, need more sleep, and yet often don’t sleep well. My stamina and durability have declined. I am still seeking to discover my new ‘normal’, but I am aware that it must be lesser than the previous normal. While I pray regularly for healing and relief, I must factor in continuing daily chemo for the remainder of my life.

A friend said to me this week, that not only have I had to drive the ship, but I’ve had to build the ship while driving it. It’s had its challenges, but I’d take the opportunity all over again. And I will miss it—that’s for sure.

This is not to say that I intend to stop serving within FIEC. Fiona and I have developed significant and supportive relationships among pastors, wives, and churches. We enjoy being able to offer practical ministry help, mentoring, and encouragement. It’s a joy to partner with churches to spur them on. It’s been a privilege to represent FIEC, as I’ve visited colleges, spoken at conferences, and exercised wider ministry. I will share with you more of our future plans as they become clearer.

I want to thank everyone involved with FIEC for the honour of serving you over the past three years. Thank you for your faith in me as I’ve sought to pioneer this role. It’s been a privilege to serve alongside each of you. I’ve appreciated your support and your fellowship. I’ve loved the opportunity to invest in the FIEC ministry, and to encourage men and women to work together in building God’s kingdom. Visits to churches and our annual conferences have been highlights for me over my time in this role.

As I’ve said, it’s been a tough decision to step down as National Director. I am stepping down from this specific role, not from ministry. I want life to continue to be about the service of God and others, it will just take a different shape. I understand that this will be disappointing news for some—we feel the grief ourselves. We would value your prayers and encouragement at this time of change.

It’s not a cure, but it is good

IMG_4661My 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.

Round 2

This post is by Fiona McDonald. We are in this together.

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Ding. Ding. Ding.

The bell sounds the start of round 2.

This will be a different round from the first round.

Round 1 had seen an unknown featherweight sent into the ring against a known heavy weight—LC.

No one had known why the round had even been scheduled. It was a total mismatch.

There had never been any doubt in the minds of most as to the outcome.

It had just been a warm up round for early spectators to the main event, a small sideshow off to the side.

But as the young featherweight danced around the ring, in his naivety throwing punches that LC hadn’t expected, fighting in a totally unconventional style, this round had gathered the interest of the spectators, both professionals—medical and theological, and amateurs—believers and non-believers.

Much to everyone’s amazement, including the featherweight himself, blows had been delivered that had knocked LC around, causing him to stumble and fall.

The judge’s decision was totally unexpected—the featherweight had won the first round.

But now the bell is ringing for the second round.

It has been a long time since the first round.

The crowd has drifted on to other matches, other things in life.

The featherweight himself has moved on from that first round.

The unexpected win had given new lease to life.

There had been the book written of the experience and talks to encourage others in their unexpected fights with LC’s brothers.

There had been a new job—leading a church in the Stromlo region. Then taking on and shaping the first FIEC national director job. With pastoral ministry to the local, national and even international church.

There had been the fulfilment of bucket list prayers—kid’s graduations; weddings; special birthdays; the joy of four grandchildren; family holidays to beautiful places; joy, beauty, life; celebrating the life God continued to give; celebrating NED.

But there had also been occasional reminders—scanxiety every 3 months; the serious oncologist with somber warnings; the progression of LC in others; and the deaths and funerals of fellow LC and other C brothers and sisters.  Life, and sometimes even breathing were reminders of LC not being far away.

And now the bell sounds for round 2.

Years later…

Some had thought the battle had been won and there would be no round 2.

But the wise, including those in the corner of the featherweight, hadn’t been caught totally unsurprised when LC suddenly scheduled a second round. LC didn’t like losing. His backers didn’t like losing. They’d bided their time before turning up again, hoping to catch the featherweight off guard, untrained, unprepared.

It’s now an older, middleweight who now steps into the ring against LC.

Older, wiser, more tired, still bearing the bruising and scarring from last time.

But not totally unprepared.

Not quite so naïve as last time.

Maybe more skill than last time?

They’ve been working on the left jab, fighting hard, building strategies.

Jab… the research and experimenting with new treatments that has happened in the last 8 years. No longer is the world so scared of LC, or his siblings. Great advances have been made.

Jab… no longer is all LC the same. Now it is understood at the molecular level, cell types and genetic mutations promptly looked for.

Sure, there’s still the discrimination… “you must have been a smoker” and “You get what you deserve”.

Sure, funding for other Cs is still greater… who doesn’t want to help their mum, their girlfriend when they’ve got BC? Which bloke hasn’t come to realise more about PC? Who hasn’t been encouraged to do their poo test when the government sends it out? Which lady hasn’t been cheering that pap smears are now only every 5 years and encouraging their teenage girls and boys to suck it up and have their HPV immunization.

The middle weight is grateful for groups like the Lung Foundation Australia, and for their support, research, and advocacy. He’s got involved. He’s joined the team. He’s been in the papers and on TV.

HIs involvement in Rare Cancers Australia has opened doors to better government understanding and funding.

The middle weight has been glad to be another little voice in the PBS listing of new medications and the need for genetic testing. It’s been a pleasing change from the initial “I’m sorry, we don’t speak with the public” to now being asked to participate in public forums, as a ‘consumer’.

Jab… many LCs are able to be treated more like a ‘chronic disease’ than a ‘death sentence’. It’s still the largest C killer, but things are changing.

Jab… in 2011 research was still deciding that chemo could continue beyond the first four doses to a maintenance regime—something the featherweight had proved in person, with four gruelling years of maintenance chemo to back up his surprise win.

But the glimmers of targeted therapy had been just beyond the featherweight’s reach. Now they are a reality, things have changed.

Jab… the targeted drugs are now first line therapy, and second line therapy and even third line therapy. They are now standard treatment. And they are available to our middleweight combatant. The question is more “which one to use?” rather than desperately trying to get access.

Jab… we’re not alone. Last time the featherweight coach had been desperately researching, desperately trying to find specialists with understanding and experience. Now these people are all in place. They are on our team.

A respiratory physician/oncologist in our neighbouring town of Port Macquarie.

A world class researcher and expert in Melbourne.

Access to the best research through the LC international symposium. Research that comes straight to our email box, rather than having to wade through the internet.

Initially it was the patient experts on the online community, Inspire, and the medical experts who took time to answer on CancerGrace.

But now a specific ALK group—connections in Australia, NZ, Canada, the US. Friends online have become friends in person. Friends we’ve shared our lives with, who’ve stayed with us, and at whose funerals we’ve wept.

Jab… Jab… Jab…

Our technique has certainly improved.

But it was the right-hand knockout punch that caught us as much as our opponent by surprise.

It totally blew us away. LC throwing in the towel. NED being announced and continuing to be announced with successive scans.

The joy and privilege of life granted, the miracle of healing despite the odds and the usually powerless chemotherapy combination.

The knockout punch forged through desperation last time, has now strengthened.

The right-hand cross of trust in God, forged in the battle last time, supported by the reading and writing of books and, most importantly, given its power by people’s prayers.  This punch has continued to be practiced and used and refined.

It’s been humbling to have had so many people say to us over the intervening years that they’ve been praying for us.

David didn’t want you to be uninformed.

You prayed and many have given thanks on our behalf for the gracious favour granted to us in answer to the prayers of so many. To see prayer—intentional and interventional—makes us more aware than ever that we’re not alone, and we don’t suffer alone or in silence. God had given us the community of the church to care, love, support and pray for each other.

We do not want you to be uninformed, brothers and sisters, about the troubles we experienced in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. 10 He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, 11 as you help us by your prayers. Then many will give thanks on our behalf for the gracious favour granted us in answer to the prayers of many.
(2 Corinthians 1:8-11)

It’s been amazing to see God at work in so many ways through this first round.

To know the reality of Romans 8:28 in our lives, and to see the effect flow on into the lives of others.

And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.

It’s been wonderful to enjoy the peace of Philippians 4:6-7, rather than anxiety.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

It’s been a blessing to rejoice in our physical, emotional and spiritual sufferings, and to know the hope that God gives. It’s been a privilege to see God act in mercy, reconciling people to himself.

we also glory in our sufferings, because we know that suffering produces perseverance;perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.
(Romans 5:3-5)

It’s been a joy to receive comfort from God and to seek to offer real comfort to others, through the comfort we have received, praying with and for them, trying to encourage others to persevere through suffering because the rewards are immense.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
(2 Corinthians 1:3-4)

It’s been a privilege to continue to minister to God’s people, to hear David preach, to be part of our local churches—Crossroads, Stromlo, and now Salt.

It’s an awesome thought to know that we’re in the plans and purposes of God for our lives. To know that nothing is beyond his control, his knowledge, his reach, his working. To know that our time is in his hands, that he is all powerful and all good, and that he is indeed our Rock and our Redeemer.

The bell rings for round 2.

They had never wanted to enter the ring first round. They wouldn’t have wished it on their worst enemies, and yet it has been a joy and a privilege and something that had brought them closer to God and given new ways to serve others.

The bell rings for round 2.

Slowly the middleweight climbs onto the canvas. The scoffers and jeerers can be heard. The doubters are fearful. The resilient stand grim-faced and determined.

The crowd is expectant.

The bell rings.

The combatants face off, mentally preparing for jab, jab, jab, right cross.

But this round and many others were all won so many years ago.

Jab… the creator and sustainer of the world entered our world as a human being.

Jab… his teaching brought wisdom and understanding of the one true God.

Jab… his miracles pointed out the presence of God in their midst.

Uppercut to the jaw… his crucifixion.

Knockout punch… his resurrection.

The bell rings for round 2.

The combatants step up.

There is confidence and a trusting smile, for we know that Round 2 was won many years before. And even if we lose, yet we win.

20 I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. 21 For to me, to live is Christ and to die is gain. 22 If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! 23 I am torn between the two: I desire to depart and be with Christ, which is better by far; 24 but it is more necessary for you that I remain in the body.
(Philippians 1:20-24)

And through it all, we keep trusting in our great God—faithful, kind, good, sovereign, loving, and powerful— and we are deeply grateful for those who will pray with us through this next round, comforting, encouraging and spurring us on.

Goodbye NED

I’ve got some news to share and I apologise for the impersonal nature of this communication. Some of you have kindly asked about my health over recent months and I have given partial and non-committal answers. I haven’t been that well, and have undergone many tests and scans and have not had clarity until very recently as to what is going on.

The bottom line is that I’m no longer NED (No Evidence of Disease). My cancer is back. There is clear evidence of cancer growing again in my left lung and pleura. I have suspected this for some time as I have been unable to shake symptoms, such as back and chest pains that have grown more severe, a cough that will not go away, and increasing breathlessness after minor exertion such as walking up the stairs in our house.

IMG_4073It has been a slow and detailed process to reach a confident diagnosis. I’ve had multiple CT scans, a PET scan, blood tests, and a lung biopsy taken under CT. All this has confirmed that the original cancer has progressed in the same area of the left lung and pleura.

The diagnosis was not a surprise, but it has been hard to take. I’ve enjoyed more than three years without chemo and I’ve been enjoying a pretty ‘normal’ life. With a phone call from the oncologist, all that has changed, and I have once again become a cancer patient.

IMG_4166I am very grateful to God for the availability of new drugs that target my cancer sub-type: ALK. When I was first diagnosed, these types of treatments were only just being developed. In fact, Fiona and I both lobbied the PBAC to have these drugs available in Australia and placed on the PBS to make them affordable to people. I have now been on one of these targeted oral chemotherapies for a few weeks. The regime is completely different to my previous four years of intravenous chemo. I take two lots of four tablets every day. The drug is a targeted therapy. It is a new technology, developed since I was first diagnosed. It would have cost us $100ks, but is now available on the PBS for less than $40 a month.

We don’t know whether or how well it will work, but our prayer is that God will use this treatment to give me many more years to come. There is initial evidence that it is doing something as the pains in my chest aren’t as severe, but there is a long road ahead. We know some people who have done really well on this treatment—some who, like me, were given months to live, but have been no evidence of disease or contained disease for years now.

It will take a little while to get used to this new regime and to manage the impact of this treatment. The side effects are becoming more obvious. The main impact so far has been with swelling in my feet and ankles, myalgia in my legs, fatigue, and photosensitivity— hence my new hats! We will need to monitor the impact on heart, liver and kidneys. There will be regular visits to specialists, blood tests, scans, and more. I will need to monitor my energy levels and work out my capacity for various tasks and ministries.

If you are one who prays, then I ask you to pray: for healing; for the treatment to be really effective; for the ability to cope with the ongoing chronic nature of things; for our mental health—that we will trust God and not get too down; for Fiona who has asked for patience; for our love and kindness towards each other as we process life together through different lenses; for our children—who are older now, but have strong memories of last time.

There will be much more to say, we will need encouragement, prayers and support on this journey. We know God is with us, loves us, and will never leave nor forsake us.  God, in his mercy, listened to the prayers of so many in 2011/12 as people pleaded with God to extend my life. My hope is that God will grant me many more years in his service. So please join us in prayer.

Feel free to get in touch, but appreciate that there is a lot going on at the moment and it might take a little while to get back to some of you.

December 2 seven years on

IMG_2831It’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)