Category: Journey with Cancer

I’ve just launched a new blog site at hopebeyondcure.com. This site will provide access to the book and, over time, related resources. I will continue to post about the journey with cancer on this site, while also aiming to build resources for people with cancer and those caring for them on the new site.

I am grateful to Matthias Media for all the work they have done to get this book ready. The official launch date is 1 March 2014, but we expect to have the printed books available from mid to late January. They have fast-tracked the eBook and Kindle versions of the book to make available to some of our friends who are struggling in the later stages of their cancer now. If you are interested in getting an electronic edition of Hope Beyond Cure you can purchase it by following the link on the new site above.

As I lay in hospital nearly two years ago, I prayed that God would be gracious to me and allow me to live long enough to meet my first grandchild. Mind you, I didn’t share this prayer point with my children because I didn’t want to put any pressure on them! Well, two weeks ago God answered my bucket list prayer when Liam John was born to Sharon and Luke. We love him. I have to pinch myself to believe that I’m actually a grandpa, but it’s pretty cool. He doesn’t say much, but we like hanging out together in the hammock in our backyard!

I’ve now officially lost count of how many courses of chemo I’ve had. Somewhere over 30 is the answer. I just keep on putting more and more poison into my body! People have asked me whether it gets easier. That’s difficult to answer. I struggle more with anxiety now. As the day approaches, the blood tests, the smell of the ward, the needles, the confinement, the knowledge of what’s to come. It all seems to increase my anxiety.

The last couple of treatments I’ve displayed more physical anxiety symptoms. My temperature goes up and I start sweating. The nurses bring me an iced water, I raise my feet, and I try to relax. It’s easier if I can pass the time quickly, but I can’t stay focused on anything. I need to shut my eyes. It would be easiest if I fell asleep. I ask the nurses to speed up my dose, to get out of there more quickly. I do pray about my anxiety, but God doesn’t necessarily take it away. Still, it’s good to talk to him about it.

The after-effects vary considerably. In some ways, knowing what to expect makes it easier. But this last cycle surprised me. The aching, and cramps, headaches, and nausea all seemed so much worse. I wondered if it was because I’d lost so much weight. I thought perhaps they were overdosing me with the poison, because the dose is calculated according to bodyweight. But a call to the ward today revealed they’d been under-dosing me for a year or so! It had been based on a weight that I haven’t been since April last year.

This has been a difficult week to feel so sick. My mother has been in hospital, my parents’ house is under threat from the fires, there are big issues on the horizon, we’re expecting our first grandchild, there are talks to be written, and clear head and able body would be so helpful. But I can’t control these things. Only God can. And he decided that I’d be better off spending time in bed and achieving very little rather than busy solving the world’s problems—or even my own.

Another good lesson is patience, humility, and trust.

Yesterday I met with my oncologist to discuss how things were going. He was pleased with my condition, commented on my weight loss, and was open to discussing longer term strategies. The immediate future means continuing on the three-weekly regime of chemo with Alimta and Avastin. This has proven the right cocktail for attacking my cancer, even if it has resulted in some damage to the rest of me. I’m also hoping to take a brief rest every now and then to help the body recover.

He also informed me that Crizotinib (Xalkori) has now been approved by the TGA for use in Australia. It is available in many countries throughout the world, but Australia has been dragging the chain. If you’ve been following this blog for some time, you might remember that this is a targeted therapy for the particular genetic mutation (ALK+) that is driving my cancer. This drug blocks the cancer pathway without having much impact on the other organs in my body. While not being a cure, Crizotinib has given medical hope to many lung cancer patients throughout the world. We thank God for this development as it opens the door to other treatment options down the track if needed. Thank you especially to those who have prayed that this drug would become available.

On Friday I signed a contract with Matthias Media for them to publish my book, Hope beyond cure. I’m very excited to have this opportunity. It’s not a book I ever envisaged writing—actually I never envisaged writing any book. My desire is for this book to encourage people. I pray that people will journey with me as I explore where hope can be found. I thank God that he has given me this opportunity.

Thank you to all of you who encouraged me to write. It has been a steep learning curve, but I hope what I’ve learned will encourage others. At this stage, we are expecting the book to be available sometime early in the new year. It won’t be ready for Christmas, but then it’s not really a Christmas present type of book. If you know people who are doing it tough, struggling to find purpose in life, have questions and doubts regarding faith, going through serious illness, even facing off against death, or just like reading—this could be for them. I believe it engages with many of the serious questions we all face, but rarely discuss—but I’ll leave it to you to decide (shameless early plug)!

This week I had further scans to determine if the tumour had regrown or spread into other areas of my upper body or brain. There is always a measure of anxiety at these times. Based on the last scan there would either be ‘no’ news, which would be good, or ‘new’ news, which would be bad.

The news is good—no signs of the cancer—thank God!

I’m thankful to God for the way in which he is preserving me. I no longer take life for granted and am more conscious of making the most of the days that God gives me. I’m also determined to take my general health more seriously. While the chemo continues to knock me around, I don’t want to keep using it as an excuse for failing to exercise and eating too much. I’ve recently enrolled in a weight loss program. My aim is to get from 96kgs to somewhere between 80 and 85kgs. I’ve also joined an exercise and weights program organised by a sports physiologist who specialises in training people recovering from cancer. It was a tad embarrassing to be shown up by women in their fifties and sixties on my first visit. But then my body hasn’t done anything like this in a long time.

I’ll let you know when I’m a lean mean fighting machine! But I don’t think I’ll be showing my before and after photos.

Dear family and friends,

This week I had my first visit to the oncologist in a few months. I used to describe this man as my pessimist specialist, but in recent times he’s been brighter, given me encouragement, and offered the occasional smile. Yet he remains my helpful reality check.

I’m not sure what I expected him to say during this last visit. Perhaps, I wanted to hear that ‘my cancer journey is now over; I can get on with life again; no more treatment; chemo is a thing of the past’. If so, then I must have been in a dream. He can’t tell me this, for the simple reason that he can’t know this to be true. I lack that special CMS—Cancer Monitoring System—that would tell me exactly what is going on inside me, what needs to be done, and how long it will take!

The last scan declared me to be NED—No Evidence of Disease. This means that the imaging is unable to detect any tumour. My oncologist will not be drawn into overstating what this means. Put simply, he reminded me on Wednesday, that this doesn’t mean I have no active cancer in my body. He spoke of me again as a chronic patient, who will continue to require long term treatment, and potentially multiple strategies of treatment.

So what now? I stay on the chemo regime that I’ve been on now for eighteen months. I will have 3 weekly infusions of Alimta and Avastin, until such time as I cannot sensibly tolerate the toxicity or that it proves no longer effective in dealing with any cancer. Throughout this time, I will need to monitor the effect of the drugs on my heart, blood pressure, liver, kidneys and other vital organs. I will continue to have roughly quarterly scans to track any developments with cancer.

In my case, while it is true from an imaging perspective that I am NED, it seems wiser to take the attitude that I am AAC—Assumed Active Cancer (not Adam Ashley Cooper, though I’d love to be able to represent Australia in rugby!).

This is an important reminder to me not to put my faith in medicine. I need to continue to trust God and seek to make each day that he gives me, count for eternity.

Thank you for your ongoing support and prayers

Dave

It’s been a while since I sat at my keyboard and typed a post. We’ve been on holidays! Holidays from the cold of Canberra and the toxins of chemo. And it’s been good!

It was a huge joy to celebrate the wedding of Matt and Elizabeth and to be invited to share a few words at the wedding. We are very excited for the two of them and so encouraged that they are building their lives together on the good news of Jesus.

Much of our holidays was spent dodging the rain, but God was kind to us, providing friends who housed us in the worst of downpours. We spent a few days camping at Byron Bay, with the kids surfing the Pass. A few more days in a cheap resort at Noosa with the kids spending each day surfing the Boiling Pot. The remainder of the time we spent on Fraser Island, camping, fishing, and four wheel driving.

All in all, it was a terrific family time, and I really enjoyed the physical activity, adventure and feeling of being alive. Much of the time I could barely walk, due to the pain in my feet and ankles, but it was worth it!

I must have got the 4wd bug, because I’ve since found myself being interested in two inch lifts, air lockers, and dual battery systems! I can dream, I suppose.

Since we’ve been back I’ve had another dose of chemo. No, I don’t know how many more and yes, they still knock me around.

We’ve enjoyed watching the Brumbies make the Super 15 final. The kids are back at school. Marcus is preparing to play for the junior Brumbies against NSW and Victoria. Grace is counting the days until she can get her license. And Fiona and I are waiting to be grandparents!

I’ve been given a recommended deadline to finish the book I’ve been working on, so this week I’m headed to the south coast again to get some undistracted writing time. I’m hoping to do some serious editing work and get the final shape of the book together for the publisher. I’ve also got a sermon to write for next weekend.

Next week I’m heading to Melbourne to speak with a bunch of church planters about lessons I’ve learned. And then I’m headed north of Sydney to speak at a weekend away for the college that Matt and Elizabeth lived in. They will also be on the weekend, as cooks.

So lot’s on! Right now, I’m still in a bit of a chemo cloud. So if you pray, I’d love you to ask God to enable me to think really clearly and a finish a book that will offer genuine hope to others. I’ve probably bitten off too much, but with God’s help, I hope to make a positive impact where ever I can.

Thanks,

Macca

Since my good scan results, I’ve been asked by a number of people what our plans are. Some have asked if we still have intentions of moving north to Darwin, or whether we see ourselves planting a church somewhere else. Some have wondered if I will take a new role in our church, do more preaching, or take up a new ministry. I’ve been invited to consider training some young preachers, mentoring other pastors, and consulting with some leaders in other churches.

The truth is we don’t know what our plans are. In some ways it doesn’t feel like anything has really changed. I still went for chemo last week. I’m increasingly fatigued and I’m currently struggling to get rid of a chest infection that has knocked me round for two or three weeks. The kids are heavily engaged with school, sports, church and more. Marcus got knocked out in his rugby match today and Grace scored three goals at soccer. Fiona continues her work at the Aboriginal Health Centre and her own personal ministry with people at church. Recently she enjoyed a flying lesson in a Gazelle 25. Not for me though!

I swing like a pendulum in deciding what I can and cannot do. This week I offered to speak at church on the weekend but the following day I managed to nearly lose my voice. Today I was looking forward to spending Fiona’s birthday with her in Wollongong, but I could barely get out of bed after an exhausting night coughing, vomiting, and shivering in minus five degrees. It seems like the cold doesn’t agree with me! Can we move Canberra to the Sunshine Coast please?

This week I need to focus on getting well because things aren’t going to get any warmer. We’re headed to Lithgow for Matt and Elizabeth’s wedding. It’s very exciting to be able to share in this wedding because for many months I literally doubted that I’d live to see the day.

After the wedding we’re headed to warmer climates. Up the NSW coast for some surfing at Byron Bay, further north to Fraser Island for some 4wding and fishing, then some chillaxing at Noosa, before returning to Canberra three weeks later. Praying God will give me the strength to enjoy all this and not be a burden on the family.

God willing, in the latter part of this year I will continue working as a pastor at Crossroads. I plan to focus on the ministry of growth groups and training leaders. I plan to get the book Hope Beyond Cure finished and published and available to those who need it. I hope to work on a book for mentoring small group leaders and I’ve got a few other ideas in the pipeline.

Whatever the plans, I want them to be not about me. The truth is I want to focus on what will make a difference for eternity and for God to receive all the glory.

Not to us, Lord, not to us
but to your name be the glory,
because of your love and faithfulness.  (Psalm 115:1)

Today I sat by the bed of a friend in hospital. He too has lung cancer. On the outside he looked weathered and aged. He was frail and broken. And yet he radiated an inner contentment. He wasn’t looking for distractions. The television was off. There were no games or books or magazines or electronic toys. He preferred to reflect and to pray. Life had a potency for my friend. He meditated on life and death. He’d spent many hours contemplating these words by Jesus:

Whoever believes in the Son has eternal life.  (John 3:36)

Now this is eternal life: that they know you, the only true God, and Jesus Christ, whom you have sent.  (John 17:3)

My friend knows eternal life—now. He knows God, because he knows the one whom God has sent, Jesus Christ. He spoke joyfully to me about Jesus. His eyes were filled with tears of wonder and thankfulness as we spoke.

Looking at my friend reminded me of the unrelenting surge of disease, decay, and death. But listening to my friend pointed me to the one who has overcome it all. He knows that the hope he holds is real. Death holds no fear for my friend. He’s facing life’s harshest moments with a contentment that can only come from God.

And there’s nothing presumptive about my friend. He understands that God doesn’t owe him anything. He has no rights before God. He’s not claiming any religious or moral superiority. My friend simply knows that God is a merciful God.

We prayed together. We asked God for many things. And I was humbled to hear my friend say these words:

God, have mercy on me, a sinner.

Years ago Jesus told a story about two people with very different outlooks on God and themselves. I was reminded of this story today, as my friend and I prayed together.

⁹ To some who were confident of their own righteousness and looked down on everyone else, Jesus told this parable: ¹⁰ ‘Two men went up to the temple to pray, one a Pharisee and the other a tax collector. ¹¹ The Pharisee stood by himself and prayed: “God, I thank you that I am not like other people – robbers, evildoers, adulterers – or even like this tax collector. ¹² I fast twice a week and give a tenth of all I get.”

¹³ ‘But the tax collector stood at a distance. He would not even look up to heaven, but beat his breast and said, “God, have mercy on me, a sinner.”

¹⁴ ‘I tell you that this man, rather than the other, went home justified before God. For all those who exalt themselves will be humbled, and those who humble themselves will be exalted.’  (Luke 18:9-14)

 

I didn’t manage to get out of bed until noon yesterday. Today it was 1pm. I’ve been absolutely exhausted, much weaker than I remember being before—but that probably says more about my memory than my strength. Chemo is a nasty experience and it doesn’t get any easier the more often I have it.

The family are off doing their thing. Rugby, soccer, shopping. I’ve been sitting on my bed feeling sorry for myself. I’ve been listening to some music, and it’s a pretty fair indicator of my mood. Sometimes when I’m down I put on the Manic Street Preachers and listen to songs like You’re tender and you’re tired.

You’re tender and you’re tired
You can’t be bothered to decide
Whether you live or die
Or just forget about your life.

Bleak and depressing. I know it’s not helpful, but for some reason I migrate to songs like this when I’m feeling down and overwhelmed. It doesn’t lift my spirits. It just confirms me in my misery.

Having a chronic sickness is a lonely experience. It demands much patience. It does get too much at times. You’d think after my last scan results, that I’d be filled with gratitude and joy. Deep down I am thankful, but the difficult journey continues. The chemo is as harsh as it was. My weariness grows worse. And I don’t see an end in sight.

So, will I just wallow in self-pity? Will I focus on my suffering? Will I become all-consumed with myself and my needs?

Please God, don’t let me! Please burst my self-pity bubble.

I thank God that he has since sent me three reminders this afternoon.

1. I turned on my phone and received this text: Hi David – it’s 6 months to the day since my operation – and I’m so grateful (PTL). How are you doing? Blessings.
2. The phone rang shortly after and a friend from Sydney called, simply to see how I was going? I enjoy getting calls like this, so it was a big encouragement.
3. The music on my laptop moved on from the Manic Street Preachers to Matt Redman performing 10,000 Reasons. These words stood out with a message for me:

The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

You’re rich in love, and You’re slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find

And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore