Changing the face of lung cancer

06B-DavidTomorrow is World Cancer Day. The Lung Foundation are launching a campaign called Changing the face of lung cancer. The aim is to increase awareness, reduce stigma, and encourage people to understand the importance of recognising symptoms to aid in early detection. Along with a number of others, I’ve been asked to share my story. You can view it here. Let me encourage you to read each of the stories on this site. When it comes to reporting on cancer, so often we simply hear the statistics. Well, every statistic is a precious life that matters to God, to family, and to many others. You will meet many wonderful people as you read through their stories.

Distressingly desensitised

lung_cancer_awarenessI headed to the chemo ward last week, much the same as any other week. But there was a difference—it wasn’t my week for treatment. I was visiting a friend who was having chemo for the first time and I figured he’d like some support.

As I drove to the hospital I became distressed. Not because I was heading to my least favourite place in the universe. Not because my friend had cancer. Not because he was only 17 years of age.

I was upset that the whole experience seemed normal. It seemed okay to be visiting a boy with cancer. I wasn’t shocked or horrified that this should be happening to someone so young and fit, who had their whole life ahead of them. There were no cries or tears or anger. I realised that cancer had become normalised for me. And I hated that fact.

There is nothing normal or acceptable about cancer. It’s a blight. It’s a parasite. It feeds on life. It steals life. It destroys life.

Dear God, please fix my blurred vision to see things for what they truly are. May I not grow desensitised to disease and suffering and death. May I not grow blasé to the horrors of cancer. Enable me to weep with those who weep. Fill my heart with compassion and kindness. Strengthen my hope in your saving grace and lead me to share this with others.

When Cancer Interrupts

when-cancer-interrupts-1Books on cancer—I tend to buy them, read them, and subject them to greater scrutiny than many other books. When Cancer Interrupts by David Powlison is more of an essay than a book, being only 20 pages in length. And this is one of it’s strengths. People facing such trauma as a cancer diagnosis are unlikely to settle down with anything that seems too heavy or unwieldy. Let me say at the outset that I am very encouraged and positive about this little book. But before I explain why, I need to express my only criticism and a plea to the author and publishers.

Please chop out the following sentences in the opening paragraph!

It is a bit like coming home after an evening out to discover your home broken into, every drawer ransacked, and your most treasured possession stolen. You feel betrayed. The enemy got inside.” (p3)

No it’s not! I’ve had the experience of having our house broken into a number of times. I’ve had my wedding ring stolen. I’ve had my motorcycle stolen. We’ve had treasured gifts to my wife stolen. But, with respect, this is nothing compared to being diagnosed with terminal cancer. This illustration trivialises the impact of being told that your life is now effectively over. Life is not equal to stuff.

Take out these sentences and I’m engaged. You understand my plight. You sympathise with my fears. You invite me to journey with you in your book.

Personally, I don’t think you need any metaphor. Just tell it like it is. You’ve been through it four times. Wow!

Having got that off my chest, let me say how wonderful this booklet is. I’d make this a go to book in ministering among those with cancer and their carers. In fact, I’d love it to be available online as a free pdf to get it out there as easily as possible (I had to order my copy from the USA).

Powlison brings comfort and hope by pointing his readers to the beautiful words of Scripture. I found myself saying “Yes. Yes. Yes.” as he quotes the words of the Spirit.

God is our refuge and strength,
    a very present help in trouble.
Therefore we will not fear though the earth gives way.
(Psalm 46:1-2)

He has said, “I will never leave you nor forsake you.”
(Hebrews 13:5)

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.
(Psalm 23:4)

When Cancer Interrupts takes us on a journey from fear to faith. It sympathises with our troubles; understands our uncertainties, pain, and fears; recognises our questions; identifies with our loss; feels our vulnerability; and calls us to acknowledge our struggles.

We are reminded that God is always with us and he invites us to cry out our troubles to him. He listens and cares. Rather than God being absent in the face of a serious cancer diagnosis, he remains close. God is the rock solid constant. He calls us to live out our faith in the midst of our fears. While we benefit so greatly from the love and support of close family and friends, Christ walks closely with us even through the valley of the shadow of death. He will stay with us even when and where others cannot.

Powlison calls us to cling to Christ by faith when we face the trials of cancer. I found the following words to be especially helpful and wise.

If your faith does not come to life in your weakness and need, then fear and false hopes take over. “I’m deathly afraid” and “I can beat this” are evil twins. On the one hand, fear bullies you into putting your ultimate hope in something that’s never good enough—doctors, percentages, treatments, a cure, strategies for self-healing, keeping yourself busy, self-numbing. On the other hand, pride and self-trust seduce you into thinking that you don’t need to be afraid, that faith is a crutch for weak people, and that you can be stronger than cancer and stronger than the shadow of death. (p14)

I find this to be so true. People speak of battling cancer, struggling against cancer, fighting the cancer. They’re admired for their strength, for being champions. And sadly we also describe losing the battle or giving up the fight. Why can’t we be allowed to acknowledge our weakness, our needs, our frailty, our dependence of people, medicine, circumstances outside our control, and ultimately our need for God.

This is not a self-centred or self-help book. It takes us to God, invites us to rest in him, and shows how we can reach out, even in our sickness, with love for others. Little things can make such a difference. And God is in the business of working his strength through our weaknesses.

If we don’t know the love of God in Jesus Christ, then this book points us to the source of life and hope. If we do know him, then we are called to come to him in our times of need.

David Powlison, thank you for writing this little book.

Please put Crizotnib on the PBS. Please!

This an edited version of a letter my wife, Fiona, sent to support an application to the Therapeutic Goods Association (TGA) to ask them to please put Crizotnib (Xalkori) on the Pharmaceutical Benefits Scheme (PBS). This drug has proven results and yet is virtually unaffordable to all, at $7400 per month.

I understand you are collecting letters of support for Crizotinib being accepted on PBS. I’m not sure if TGA read submissions from individuals, but here goes…

This is not a scientific submission, but more a letter from one family suffering through a family member having ALK+ lung cancer. Whilst the TGA doesn’t court letters of submission from patients, this is an attempt to explain how TGA decisions affect individual families.

My perfectly well husband presented with a pleural effusion in Dec 11, being diagnosed with ALK+ lung cancer. He missed getting on the Crizotinib trial, because by the time we got the result, he had already received his first cycle of carboplatinum, alimta, and avastin, thus making him ineligible for the trial.
I chose this combination over what was being offered by the PBS (and our oncologist) at the time—Carbo/Docetaxel—because international research seemed to suggest it was more effective and had less severe side effects for general lung cancers.

My understanding when I spoke to the TGA a couple of years ago, was that the testing for ALK had to be passed by MSAC, with Crizotinib going before PBAC at the same time, before the TGA could consider putting Crizotinib on the PBS. My understanding is that both MSAC and PBAC have again deferred decisions as of Nov 2013. At that point they were struggling to understand who to allow ALK testing for.

As a carer for her non-smoking 49 year old Aussie husband it was pretty obvious to me, especially when he came back EGFR negative, that we should ask for and pay for the ALK test.

Looking through the ‘ALK+ roll call’ discussions on http://www.inspire.com it’s still obvious to me who should get tested for ALK. They are all younger non-smokers, who present late with stage 4 metastatic symptoms, because the original is on the periphery, not in the bronchi like standard smoking cancers. There are also histological features which are more suggestive of ALK—signet ring or acinar histology.

Our pathologist noted these on David’s histology, alerting the thoracic surgeon that this was unusual for standard lung cancer, and that maybe there was something else going on.

Surely it’s not too hard to offer ALK testing as a priority to patients in this category.

I’ve also heard that there’s new testing becoming available, which will be much cheaper, quicker, and give more of an idea as to whom to send for the more expensive testing. Hopefully, this will be commonplace soon.

In 2014, about 11550 Australians are expected to be diagnosed with lung cancer. Approximately 15-20%, or roughly 2000 people, will be non-smokers with a genetic mutation. Of these approximately 3-4 %, or 35 people, will be ALK+.

The Inspire roll call only found about 10, but obviously not everyone reads or visits http://www.inspire.com, and nor is everyone connected via a clinical trial.

We do not know of any other ALK+ patients in Canberra, but then oncologists don’t share patient information. There hasn’t been anyone else with this mutation coming to the lung cancer support group at Canberra Hospital.

But then again, how many are being tested, or not tested because of financial reasons?

I’ve just referred a younger,  unusual, possible lung cancer patient to Canberra Hospital in this last week, and I’ll be willing to find money for him through my workplace or the Eden-Monaro Cancer Support Group, if need be, because he couldn’t necessarily afford the money for testing.

As stated earlier, my understanding was that PBS approval for Crizotnib was again deferred in Nov 2013. This seemed more due to semantics than actual proof that Crizotinib did or didn’t work, or the cost-benefits of approval.

Even for intelligent people in the medical profession, it is difficult to read and understand the documents deferring approval. To read that PFS has shown ‘statistical improvement’ is hugely exciting. But to read ‘that OS hasn’t been demonstrated’—how does one prove that, except by time and death?

As a carer it’s also hard to read the statistics of overall survival and progression free survival without taking it personally. These statistics are talking about the future of my husband. He can’t read them without being overwhelmed, even though he’s been outside the statistics thus far.

It shouldn’t be up  to the patients and carers to have to trawl through these statistics to prove to the government that life is worth living, that some good quality of life is better than life cut short for lack of funding for medication that works, even if just for a limited time.

My husband has responded miraculously to an Alimta/Avastin combo for over 40 cycles, being NED for nearly a year and a half now. These treatments have cost us very large sums of money. Avastin isn’t on the standard guidelines treatment plan and the study on the benefits of adding Avastin to Alimta has not yet been released. Given that this combination has worked for my husband, he continues to endure the physical impact and financial costs until there is definitive proof that it doesn’t help.

But, we still need Crizotinib to be placed on the PBS list. Please consider the following…

1. The demand of  3 weekly cycles is hard. It’s hard for my husband to psyche himself to go to the hospital every 3 weeks to pump poison into his veins, knowing that its going to make him sick for the next week, often spending 3 or 4 days in bed. Not that the following 2 weeks till the next cycle are easy, with fatigue, headache, GIT upset, mouth/tongue ulceration, pain, acne, skin rash, itch, and more.

From early on he’s had to add in Cymbalta for peripheral neuropathy, increasing amounts of antihypertensive, pain relief, antinauseants, dexamethasone, folic acid, Vitamin B12 injections, etc.

Do they consider the cost effectiveness of paying for medications to deal with the side effects of ‘standard chemo treatment’? There is also the cost of the private chemo ward every 3 weeks.
Because Alimta or Avastin weren’t on PBS when he started, all treatment had to be done through a private hospital.

How much simpler it would be—physically, mentally, emotionally, financially—if my husband had been able to simply take a Crizotnib tablet twice a day.

2. Unfortunately chemo brain is a real phenomenon too (as is carer’s brain). His memory isn’t as good as it was, and nor is mine. The 3 weekly cycles take a toll on all our family, including the kids.

3. Furthermore, no one can tell us how long one can continue on maintenance therapy. When my husband was diagnosed, it was still being debated as to whether patients shoud go on maintenance therapy, whether it added anything. Fortunately that debate has been won and put to rest.

There are some in the USA, in the Inspire network, who’ve been on maintenance for longer than my husband (I think about 5-6 years is the longest). But how long can one continue to use non-targetted therapy, continually killing ordinary, healthy cells every 3 weeks, without doing some permanent harm, perhaps even causing further cancer. There is no answer to that question yet.

4. He’s worked part time since mid 2012, returning to full time work this year. He’s continued to pay taxes since his diagnosis, using sick leave and long service leave until returning to work, paying his taxes at the same rate as prediagnosis.

I’ve had to work more, to pay for the chemo, so now I pay even more tax. We have never applied for Centrelink help, or been able to because of our income. I understand that even the Centrelink payments are being tightened up, it has to be proven that you’ll die within 2 years, when all you really want to do is prove them wrong and keep living. Having not asked the government for help with living, are we also to be denied the cost of medication by the same government as we continue both to live and pay for medication, and pay taxes?

Has the cost benefit analysis been done on how I and my 4 children would have coped with me as a widow and them fatherless?

I’ve been willing to pay the cost of initial chemo and maintenance chemo, as opposed to what the PBS would have given us for free, because I think the cost benefit analysis of having a husband who’s alive has been worth it. But not everyone is as fortunate financially or with such generous friends or workplaces, who’ve supported us through the financial impact.

5. We’ve always been told he could go to Crizotinib once the Alimta/Avastin failed. It’s always been his next step. But it’s extraordinarily expensive, at $7400 month, now it’s off the special access scheme. Suddenly our next step is unsure.

6. Access to trials isn’t a certainty, as we’ve already experienced.
Nor is it without cost, as ALK+ Australian patients have moved cities to be able to access the trials in the few major centres that are offering them. Had we gained access to the initial phase 3 Crizotinib trial, we would have had to travel to either Melbourne or Sydney.

7. Highly regarded world class experts in the field of ALK+ Adenocarcinoma, including an Australian, recommend first line Crizotinib. The latest “Up to Date”, does so: http://www.uptodate.com/contents/anaplastic-lymphoma-kinase-alk-fusion-oncogene-positive-non-small-cell-lung-cancer
How can doctors follow recommended international guidelines, if the Australian PBS is still years behind?

It’s quite distressing to me to have to be writing this submission in support of Crizotinib, when I wrote a very similar submission (a begging letter really) almost two years ago. Nothing has changed in Australia, in those years. Except more friends, colleagues, patients have died of lung cancer.

Lung cancer continues to be one of Australia’s biggest killer. Crizotinib has been approved as first or second line therapy in so many countries throughout the world. It is normal in other countries, but for some reason we continue to drag the chain on best-practice care.

In the USA the FDA has now approved the second generation targetted therapies for ALK+ patients, both as initial and as second line treatments. We haven’t even got the first generation treatment approved as yet.

It is so frustrating that Australia is lagging so far behind. Bureaucracy seems to be holding us back unnecessarily. The irony is that Australians have been been benefitting from Crizotinib, at least since the phase 3 trial initiated in 2011.
Pfizer have been generously supplying both patients on the trials, and allowing patients to access the medication via the special access scheme until 30/6/14, when such access ceased.

Since that date, there have been at least two patients who’ve signed up to the Inspire Australian roll call for ALK+ patients who are struggling to how they can possibly afford $7, 400 per month. We should not be a country that only provides quality health care to the wealthy.

It’s enough being confronted with advanced lung cancer at a young age, let alone being faced with an unaffordable financial bill.

How many more people are either not being tested or not being treated because of financially prohibitive costs?

We can’t blame the drug company for trying to recoup some of their costs, when the Australian government has benefitted from their provision of the drug via trials and a special access scheme for two and a half years.

With the new trials investigating LDK378 initiation in both Crizotinib resistant and naïve patients in Australia, isn’t it time that Crizotinib is given government recognition for it’s important place in the treatment pathways?

Chemotherapy isn’t a one size fits all. As proven, Alimta/Avastin chemo has been a God-given, proven-thus-far combination for my husband. But it hasn’t worked for others.

Crizotinib has worked amazingly for some, but some have had resistance develop fairly quickly. The second generation targeted drugs will no doubt have similar success and failure stories. But that doesn’t mean people should be denied access to them if they can’t afford to obtain them privately.

What is obvious was that the older, cheaper drugs like Docetaxel were failures in PFS, OS, quality of life and every parameter you can think to measure them by, but they’re still held up as the ‘gold standard’ of treatment, by which to compare newer medications which aren’t designed to act it the same way, so shouldn’t be compared. This is ludicrous.

I hope this helps the application for Crizotnib to be place on the PBS.

Yours sincerely

Dr Fiona McDonald  (MB BS)

Song of the heart

Ben_MaccaMy good friend, Ben Lattimore, has written this Song for Macca as he reflected on a post I wrote some time back called What caused the cancer? My journey with cancer has been shared since the very beginning by Ben and his wife Beth. They were heading to Darwin with us. We shared shipping containers. [The photo was taken only days before being admitted to hospital – I don’t look well!] Our decision not to go became their decision. Ben had been planning to work with me as a ministry apprentice. The ‘Latts’ were planning to be an integral part of our church planting team up in the Northern Territory. 18 months ago we sat in a hospital visitors’ room and talked with the Latts and the Rademakers about undoing our plans.

This song tells of the greater problem within. Not the cancer, but a problem of the heart, a problem we all need to identify, and a problem that God has acted to overcome. Here are the lyrics and you can listen to Ben perform this song, by clicking the attached link: Song for Macca.

Song for Macca
Ben Lattimore

There’s a problem deep inside of me
it’s been there since the start
cancer of the lung is not my greatest ill:
there’s a deeper, greater problem
with my heart.

You won’t find it any book on medicine
there’s no test to prove it’s there
but when you start to take a look around
the symptoms are everywhere.

Oh my heart, my heart of stone
it wants to rule me
and make the world my own
oh my heart, heart of stone
well it severs every chord to the one
who I owe all things
and all things will be taken away.

Before you get to taking pity on me
would you take a look around
and an honest look at your own heart
and tell me what you found?

Oh the heart, the heart of stone
it wants to rule you
and make the world your own
oh the heart, the heart of stone
well it severs every chord to the one
who you owe all things
and all things will be taken away.

What hope is there for the heart of stone?
What hope is there for the heart of stone?
He must come and change, come and change…

Change the heart, the heart of stone
it wants to rule you
and make the world your own
but the heart, the heart of stone
can be remade into a heart of flesh
that he can call his home
and all things will be promised
and given unto you.

As my body fades I’m thankful
for I was always on this line
but now I carry this reminder in my flesh
I can’t forget the problem we all share.

Good news

firstI’ve been overwhelmed by the encouragement I’ve received over the past couple of days. Since posting about my wonderful scan results I’ve received so many Facebook, email, phone, and face to face greetings. So many have expressed their gratitude to God for his kindness.

On Thursday I was able to speak to the Brumbies after they were presented with their jerseys at the Captain’s run. They encouraged me with their enthusiasm for my news. Some shared my thanks to God and others simply expressed what @#%! great news it was. Each in their own way!

I also had the privilege of sharing my news at church yesterday morning. One person tearfully hugged me, saying their family had prayed for me every day of the past eighteen months. This is very humbling. I didn’t deserve it, but so many have pleaded with God for my healing. One little boy was so excited to hear my news that he’d told his school principal! Some hugged me so strongly I was worried my weak lung might cave in!

Last night I spoke of my excellent medical outcomes again. I was introduced with the words: ‘Macca has some great news to tell us.’ It hit me that I should share the best news I have. So I did. I spoke of the news that around 2000 years ago, Jesus died by crucifixion and then rose from the dead, so that all who trust him could have hope of new life for eternity. This is by far the greatest news. And then I spoke of my scan results, and people clapped.

Let me remind you that my hope is not ultimately in NED or remission or cure. My hope is beyond cure. It’s in the news that matters most:

Now, brothers and sisters, I want to remind you of the gospel I preached to you, which you received and on which you have taken your stand. By this gospel you are saved, if you hold firmly to the word I preached to you. Otherwise, you have believed in vain. For what I received I passed on to you as of first importance: that Christ died for our sins according to the Scriptures, that he was buried, that he was raised on the third day according to the Scriptures.  (1 Corinthians 15:1-4 NIV)

Amazing scan results NED

Dave & Fiona‘No evidence of neoplasm.’

This was the final sentence of the radiologist’s report on my CT scan from Tuesday. I went straight to wikipedia. Neoplasm wasn’t a word I’d been using. And my guess was right. There was no evidence of a tumour. Seriously? I don’t think I ever expected to read that. No evidence of cancer? I was stunned.

It’s exactly eighteen months this weekend since I was admitted to hospital, had my first CT scan, and discovered the tumour on my lung. It was about 24mm at the time. I’ve had two surgeries, twenty six courses of chemotherapy, and a number of CTs in this period. We’ve seen the tumour increase slightly to 26mm, then reduced to 18mm, to 12mm, and to 7mm in February this year. It went from a golf ball, to a pinball, to a marble, to a pea. A friend was praying it would shrink to a mustard seed next! Seems like it has. Whatever may or may not be there is too small to be seen by a CT scan. 🙂

We’ve discussed this with a couple of oncologists now. They were both amazed by how things have gone. My regular oncologist, who is very careful and conservative, kept saying this doesn’t normally happen with my type of cancer. I told him I was quite happy to be abnormal! Both oncologists have stated the importance of continuing with the chemo for now. The tumour is not evident on the CT scan, and this is a great outcome, but it doesn’t guarantee that I am cancer free. Cancer cells are microscopic. They could be anywhere and everywhere without having developed an observable tumour. The fact that my cancer was discovered at Stage 4 once it had already spread, and that cancer cells were discovered in other places, is a reminder not to make assumptions.

This scan result is the best result I could have received. To be described as N.E.D. – No Evidence of Disease – is a wonderful result. But it carries with it a huge amount of uncertainty. It’s like the results of a satellite image of a national park revealing no evidence of an escaped criminal. Higher resolution would be needed to gain more certainty. But even then he could be hiding behind a rock or under a tree and not observable. They cannot be sure with me. Even surgery, biopsies, and other types of scans have their limitations. They can identify cancer, but they can’t rule out it’s existence.

Our plan is for me to continue with chemo for a while and ask more questions. We’ll seek advice about other options for assessing how I’m going. We’ll seek to monitor the toxic and damaging impact of chemo. It’s clearly been the recipe for attacking my adenocarcenoma, but it’s leaving its mark on my body as well. I’m experiencing some neuropathic symptoms again, energy levels are low, fitness is harder to maintain, and I’m on medication to counteract significant side effects.

In short, the journey with cancer continues. In some ways I expect it will be harder. Until now I’ve had certainty. I’ve been sure of having cancer because I’ve seen the evidence. Now the evidence isn’t there. I assume there is still cancer present, and will act accordingly, but I can’t be sure.

My scan results are great news and I’m filled with gratitude to God for bringing me to this point. I thank you for your love, support and prayers. God has been listening and answering our prayers. He’s been kindly giving me time and opportunity to serve him. I’ve been praying since early last year that I would get to see Matt married and that I would get to be a grandfather. [I didn’t tell them this!] There’s now four weeks until Matt and Elizabeth get married and Luke and Sharon are halfway through their pregnancy. God willing, Fiona and I will also celebrate thirty years of marriage this year. Awesome. Thank you God for the days that you give me!

God has done a lot of work in me over this past eighteen months. In particular, he’s been strengthening my hope. Not hope in a cure necessarily, but a hope beyond cure. Hope that gives me reason to live, however many days I might have. Hope in life now and in eternity. Hope that is real even if cancer should one day overrun my body. Hope that sustains me through the ups and the downs. Hope grounded in God keeping his promises in Jesus Christ. My desire is for each one of you to know this hope. God is good.

Thank you again for your friendship, support, help, and generosity. As we continue this journey please rejoice with us and please keep on praying that God will remove all traces of cancer from my body. Please pray for wisdom for the medical specialists and for us as we decide what paths to take.

Macca

Where’s Walter?

tardisA funny thing happened on the way to work today. Actually, it began last night when I was handed a small blue tardis containing a mobile phone belonging to ABC 666 Radio in Canberra. The phone was given a name this morning. It’s now called ‘Walter’. The full name is the Walter Burley Gri-phone! The phone is being passed from Canberra local to local. The ABC makes a call each morning to find out who has the phone and to line up an interview with Genevieve Jacobs. She doesn’t know who she’s going to interview one day to the next. I was the mystery guest this morning. My job is to make sure it’s in someone else’s hands before 10am tomorrow.

The interview was all over pretty quickly. I was asked about being a pastor at Crossroads, chaplain to the Brumbies, having Stage 4 lung cancer as a non-smoker, and writing a book on hope for those with cancer who aren’t being offered hope of a cure. I explained where hope can be found, both in practical things in this life and faith in God. Genevieve said how good it would be to interview me again in two years time. I agreed. I’d like to take her up on that!

Tomorrow morning won’t be as much fun. I have my first CT scan since February. This is my reality check to find out how the poison is working and where the cancer is up to. If you pray, please ask that the CT will be very clear, as I will probably need to have it without the usual contrast medications. Please also continue to ask God to take away the cancer. I’ve got an interview to do in 2015. Thanks.

Wednesdays were pretty normal

WednesdaysGreat title. Great cover. Great book! Wednesdays were pretty normal: A boy, cancer, and God by Michael Kelley has given me plenty to think about. It’s an open and honest story of a father wrestling with faith questions, after his boy is diagnosed with leukaemia. All the books I’ve read on cancer and serious illness so far, have been written by the patient themselves. This book, by the father, feels even more potent. When it’s happening to me, that’s bad enough, but if it were my own child, then I suspect I’d find it even harder. I especially recommend this book to parents who face the heartache of their children having serious illnesses. This is a battle ground for faith. Not just intellectual ascent, but struggle to keep trusting in God.

Kelley was trained as a pastor and thought he knew all the right answers to most problems. He figured he understood faith. It was a noun. Joshua’s cancer put this to the test. He began to realise it was something he needed to choose. It was one thing to have a set of beliefs, but another thing entirely to act on them in adversity. If God was truly in control of this world, then what did that mean for the evil and cruelty he saw and was now experiencing? He couldn’t pick and choose what he liked about God. If God was to be trusted for real, then this meant trusting him in the good times and the bad.

Faith and doubt are sometimes seen as opposites. Kelley shows how they are often part of the same experience. He’s on solid scriptural ground with this, quoting the man who came to Jesus in Mark 9:24, saying “I do believe; help me overcome my unbelief!” There is a humility in these words. The man’s failings are obvious. All he can do is trust in Jesus, because his own resources are lacking. Isn’t this the essence of faith – trusting in Jesus, rather than trusting in our own faith? I wonder how often those who are perceived to have a ‘strong faith’ are tempted to trust in the wrong thing – ultimately themselves? As Kelley writes…

What if our definition of faith is wrong? What if we have been putting faith in our own ability to have faith? What if real faith is not necessarily absent of questions and doubts; what if real faith is more about what we do with doubt than whether we have it?  (p33)

As Kelley describes the impact of chemo on his boy, I find myself feeling most of what he describes. He speaks of the toxic impact, the drugs, the side effects, the pain killers. He also describes the psychological impact, the emotional pain, and the spiritual questioning. Why are these things happening? He introduces us to the experience of Job in the Bible, and his quest to find answers from God. Job puts his challenges to God, and yet God chooses not to answer them. Instead, through four chapters, God makes himself known. Not why, but who, is the answer God gives.

Never once did God crack the door of eternity and say, “See this whole thing started when Satan came walking in here…” Never once did He take Job into the future to show him the good that would come from his struggle. Never once did He reveal the way He would redeem Job’s pain. Never did God show Job one of the billions of Bibles that would be printed in the future, all containing his story. Not one single answer to Job’s specific questions. Just descriptions of himself.  (p50)

Kelley shares his ongoing struggles to find evidence of God’s love. The circumstances of pain seem to argue against God being loving towards him. Where is God when he’s needed? Why doesn’t he fix things up when he’s asked? He writes…

I didn’t need a Jesus who was sleeping in the boat while the storms raged around His friends. I needed a Jesus who was turning over the tables of sickness and disease and calling out cancerous cells like they were demons.  (p56)

I can certainly relate. What a great picture! But, if we only look to our circumstances for proof of God’s love it can easily seem like God has given up on us. We need to remember how acquainted Jesus is with human suffering. He didn’t offer sympathy card platitudes. He shared in our pain and he shed tears like us. He faced rejection, betrayal, torture and death. He bore our sin in his body. He took the judgment we deserve. Here is compelling proof that God is not remote, that he hasn’t abandoned us, and that his love is profoundly deep.

Kelley shares the breadth of grief he experienced in dealing with his son’s cancer. The dreams that were shattered and the plans unfulfilled. He speaks of losing his identity, his sense of significance, and becoming poor in a variety of ways. The experience of Joshua’s sickness and treatment was hugely demanding. It took Kelley to the ends of his resources, and it was then that he began to picture himself more accurately. When career and health and achievements and family life are all altered and threatened, then the truth about ourselves comes into focus. It’s only when the things we’ve clung to to define ourselves are stripped away, that we are freed to see ourselves more clearly in Christ.

We learn in this book about how God has brought healing to Kelley through his son’s illness. God revealed to him sicknesses that he didn’t know he had.

It’s brought to light my shallowness. It’s brought to light my idealistic view of faith. It’s  brought to light my dependence on circumstances and my reluctance to accept responsibility. It’s brought to light my love of all things material.  (p146)

God taught Kelley many lessons about patience. Patience is faith that waits. Treatment for childhood leukaemia is a long term process. Even after the words remission were used, chemo had to continue for the remainder of three years. In the midst of their pain and exhaustion, the family kept looking ahead in hope, knowing that they couldn’t have what they wanted, just yet. Living in the western world leads us to expect instant gratification, and the church has also bought into this trap. So often God says to wait. He has good things for us, but we must wait.

There were many things in this book that stretched me. The big issues for me had to do with the nature of faith. It made me realise that there are times when I assume I’m exercising faith, when in reality I’m probably not. It’s just that I become used to the routine, what’s coming up. This is familiarity rather than faith. Faith is about looking to God when the routine is blown, when the expectations are shot, when I can’t control the circumstances. It’s also about recognising God’s hand and provision in the routine and mundane. This book has reminded me that passive faith isn’t really faith at all. Faith is active and we need to fight for it.

As the Apostle Paul wrote to his protege so long ago…

10 … (some) have wandered from the faith and pierced themselves with many griefs. 11 But you, man of God, flee from all this, and pursue righteousness, godliness, faith, love, endurance and gentleness. 12 Fight the good fight of the faith. Take hold of the eternal life to which you were called when you made your good confession in the presence of many witnesses.  (1 Timothy 6:10-12)

Hope beyond cure

‘Cancer free to no hope in less than two weeks.’

This was the headline to the post I read on a cancer forum yesterday. How could things change so quickly? The truth is, they hadn’t. There’d been a bad case of miscommunication.

I browse these forums from time to time. I can’t do it daily. I find it too sad, too overwhelming. People are sick, confused, powerless, dying, and so often lacking in hope. Every day there are desperate cries of anguish. There are pleas for prayer. There’s the outpouring of grief. Sometimes there’s an explosion of anger at the merciless killer, cancer.

As I read the headline above, it clarified in my mind what it is that I so want to communicate. It’s what I’m praying my book will achieve. My goal is to offer hope beyond cure.

Don’t get me wrong, I’m 100% pro-cure. I want my cancer to completely disappear. I pray that it will and I pray the same for others. I’m excited by medical advances and new discoveries. I absolutely love hearing that someone with cancer has no evidence of disease anymore. I love the hope that comes with this pronouncement. In a sense, life can begin again. A new chapter with a new outlook.

Yet when the prognosis is bad, when all attempts at medical intervention have been exhausted, when prayers have not been answered as we might wish… what then? Is there hope still? Or has all hope been exhausted?

Is cure the ultimate hope for those of us with cancer? Is this what we hope for beyond all else? I don’t know really. I haven’t asked enough people. My guess, is that we have a range of hopes. But I’m concerned if the hope of a cure for cancer is where we stop.

What happens if we are cured? We go back to life. Not as normal. More likely as radically changed people. But then we’re likely to get sick again. It could be the recurrence of cancer. It may be something else altogether. We may recover and we might keep recovering, but there will come a day when we won’t. Death will catch up with each of us eventually.

What then of hope? Is it a meaningless platitude? Was Nietzsche right when he wrote…

In reality, hope is the worst of all evils, because it prolongs the torments of man.

Or is there hope yet for those facing death? This is such an important question and yet so often it doesn’t get asked. We become so consumed with life here and now, that we don’t pause to consider the inevitability of our death. I may not have cancer when I die, but I will still die. Is there hope for me? Is there hope for any of us?

19 If only for this life we have hope in Christ, we are of all people most to be pitied. 20 But Christ has indeed been raised from the dead, the first fruits of those who have fallen asleep.  (1 Corinthians 15:18-19)

God’s Word tells me that the answer is YES! There is hope beyond death and it’s found in Jesus Christ. I long for people to know the certainty of this hope. This is a hope that stands on the evidence of the resurrection of Jesus from the dead. If Jesus is alive today, then there is hope beyond cure. There is hope beyond death.

Letters from the land of cancer

wangerinI began reading Letters from the Land of Cancer by Walter Wangerin Jr. nearly a year ago. However, I didn’t finish it. I think I felt a little overwhelmed by it. The topic, the intensity, the unrelenting discussion of cancer and death. I wasn’t yet ready to read 22 letters by a man reflecting on his cancer. I set myself the project of reading it all this week. If I was planning to write a book about living with cancer, then I needed to consider what it felt like for the reader. This probably makes me one of the more motivated of his readers. We share the same cancer, a similar profession, same number of children, grandchildren (that’s right – I’m awaiting delivery in October), love of motorcycles, and more.

The obvious difference is that Walter Wangerin is a world-class, well-respected, writer. That makes WW a WWW! (Grandad joke!) He’s a teacher of English literature and a prolific writer of fiction. He’s a wordsmith. He’s eloquent. He’s poetic. His writing is thick, like treacle. It’s deep, intense, heavy, profound. His words are disturbing, niggling, probing. But they’re also light and fresh and invigorating. They stir the soul to action. At least, they did mine. I’ve written so many notes and comments and questions.

I found this book hard to get into, but harder to put down. I wanted to know what happened next. What did you learn? How is your treatment? How is your wife? What are the doctors saying? What are the results of the next scan? How does this mesh with your faith? What is important to you now? What will you make your priorities? What’s it like to be on oxygen 24/7? Why don’t you pray for your own healing? Why do you look forward to death? How do your family feel? What leads you to say your cancer is an adventure? Or a blessing rather than a battle? I suspect that I was vicariously travelling this journey with him, and that these are more questions about me than him.

This book worked for me. It pushed me to reflect, to reconsider my own experiences, to look again to God. It’s heavy, but he’s writing about heavy stuff. Reading 22 letters one after the other is a bit like watching a still frame motion picture. You know, the ones that show a seed being planted, a sprout emerging from the ground, a plant growing to maturity. All frame by frame. One picture per day. It’s like that. We see the outside journey experienced by the Wangerins, and we also learn of the inner journey, the impact on his mind and heart, his faith and convictions.

I’m not sure who I’d give this book to. My dad has read it, so I’ll have to ask him his thoughts. I suspect you’d want to be a serious reader to tackle it. I also suspect you’d need to be willing to be confronted heavily with your own mortality. It’s no coincidence, that I wrote the poem, Pain, while reading this book. It’s an intense book.

Following his journey throughout this book, I fully expected the final chapter to be posthumous. Perhaps, a final word from his wife, speaking of Walter’s passing. But no. It’s all Walter. The cancer was discovered in 2005, the final letter of the book written in 2008, the publishing date 2010. As soon as I finished the book, I hurried to my computer and googled his name. So when did he die? According to his website he has a speaking engagement on May 31 in West Virginia, so I’m guessing not yet!

I’d love to meet this man. I think we’d have a lot to talk about!

Being a cancer patient’s carer: A guide

carerguideCancer is tough for the patient, but it’s also tough for those who care for them. It brings so many changes and challenges, and the carer is often as unprepared as the patient. Where does the carer go for help? Many hospitals have cancer support groups, open to both patients and their carers. There are numerous websites such as inspire.com and cancergrace.org that provide information, experience and support to patients and carers. You could contact your local cancer council or other cancer support organisation for help in finding support for carers. And you will find a wealth of informed practical wisdom in Being a Cancer Patient’s Carer: A Guide by Wesley Finegan.

Every person struggling with cancer relies on having carers. These people may be professionals such as specialists, nurses, and pain managers. They may also be personal friends or relatives, often a spouse or an adult child. A competent and compassionate carer is a great blessing. I am especially blessed to have a loving wife, who keeps herself well informed about the disease, treatments, possibilities, alternatives, and more. But then, not everyone with cancer is married to a doctor ;).

Finegan’s book won’t necessarily make someone compassionate, but it will go a long way to making someone competent as a carer. It’s hard to think of an author with greater credentials to write on the topic. He has MB BCh BAO MRCGP MICGP D Pal Med’ listed after his name! I’m not sure what they all refer to, but they sound impressive. More impressive again, is his experience. He worked in General Practice with a special interest in caring for patients with cancer. This led him to become a consultant in palliative medicine. In 1994 he became a cancer patient himself and in 2003 his wife developed cancer and he became her carer. These experiences have taught Finegan much and he generously shares his wisdom in this book.

This guide is intended for practical use. It’s well constructed and easy to follow. Each chapter – and there are 43 chapters, each roughly 4 pages long – is constructed around the acronym TANDEM. They begin with some basic facts to help people understand the particular problem being addressed and then the acronym is used to examine various issues from different perspectives:

T Think
You are facing new situations regularly as a carer. Hopefully I can help you think through the issues you might have to face.

A Ask
There is so much to learn. Where does one start? What do you need to know and who can tell you the answers? I’ll try and help you with some of the questions I have asked.

N Note
Making a note of a relevant detail now might save you a lot of difficulty remembering those elusive facts in a weeks’ time!

D Do
Here I will offer you some practical ideas that have been tried and tested by my patients and some that worked for Alice and me.

E Explore
Sometimes we want to know more or find out about something we would like to know about. I’ll try and guide you to the best sources of information.

M More information
If there is something that has not been said already and it’s relevant, you’ll find it here. (pages x-xi)

I’m not aware of any other books for carers that are as comprehensive and practical as this one. It begins with the first shock of diagnosis, then addresses a broad range of symptom, treatment, and care issues, before dealing with the difficult matters of failed treatment, dying, death and bereavement. It’s concerned for the well-being of the carer as well as the patient.

It’s probably too much to take in all at once, but the beauty of this book is that it’s so well arranged that you don’t have to. You can read whatever’s most relevant to you and your situation at the time. You’ll find it easy to come back to sections you’ve skipped over, if and when they become relevant. And you can follow the links and suggestions for more information or advice when needed. I would suggest consulting it regularly as different issues arise. Flick through the table of contents so you can see the scope of the book. It would also be useful to annotate the book with your own questions and observations, so that you can follow things up with the relevant people at another time.

If you are caring for someone who is going through cancer, then I highly recommend you get yourself a copy of this book. If you have cancer and want to support your carer, then you could purchase a copy for them. It’s readily available on line so you don’t need to worry about what bookshop to look in. You’ll appreciate it and so will they. Just let them know when you give it to them, that they’re doing a great job and you wanted to show your appreciation by giving them this book!

My own personal breakdown

I’m 50 years of age. I feel 70. My doctor tells me that my body is behaving like a 70 year old. It’s a little scary. Stage IV lung cancer and 15 months of non-stop chemo can do that to you.

The lightest of exercise elevates my heart rate. I get breathless quickly. It’s hard to suck in enough air. It takes nothing to raise a sweat. A crushing feeling in the chest. Shooting pains from the lungs.

I get pins and needles in my feet and hands. Aches in my ankles. Heaviness in the soles of my feet. The signs of peripheral neuropathy. So I only wear shoes when I have to – nothing new there! We reduce the chemo and add some antidepressants. Folic acid and daily cymbalta seems to do the trick.

Headaches are common. A band round the head. Pulsing pain in the temples. Light-headed, dizzy, a cloudy feeling. Couple of panadols, it is.

Blood pressure out of control. Topping the charts one day. Normal the next. Too high overall. Fears of heart failure, strokes, heart attacks. Not to mess around with. We’ll see if daily ramipil antihypertensives bring things down.

Fatigue is growing. I can’t seem to wake up. Some days I spend more time in bed than out of it.

Rashes and redness. Blemishes and acne. Sometimes I feel like a 70 year old going through puberty. The dexamethasone steroids help for a while (don’t tell ASADA), and then we can try some claratine antihistamines, or we can just wait for it to go away.

The weight coming on, then going off, then going on more. Metabolism out of control. Unable to eat. Unable not to eat. The cravings. Self control, diet, careful eating, not too much. Sometimes I think, who cares.

The blood sugar. Getting way too high. Diabetic levels. What next? No lollies, no soft drinks, no chocolate, no jams. That’s all the food groups. What’s left? Exercise more. Get the heart rate up. Burn more sugar. Use up the fuel. I’ll probably have to take a drug for this problem too!

Add an allergic reaction to the contrasts used in the CT scan. Because I came out in hives, they won’t allow me to take it any more, lest I have a more serious anaphylactic reaction.

And then there’s just the overall feeling of being heavily poisoned. Argh!

Where will it stop? When will it stop? I don’t know. But I have a choice.

I can dwell on my problems, be filled with self-pity. I can hide from others, ignore the good, forget God, complain and grumble. I can become a completely selfish pain in the bum. I’ve got a ticket that gives me permission to become a totally self-obsessed whinging prat. It’s called cancer. It lets you get away with all kind of stuff.

Or…

photoI can take responsibility. Get enough sleep and rest. Exercise even when I don’t feel like it. Show restraint with my diet. Be patient when the side effects are worst. Push on with what hurts knowing that it’s an absolute privilege to receive the medical care I have available.

I can rejoice. I can give thanks for my beautiful wife, my fantastic children, my supportive friends, my praying church. I can thank my doctors and nurses. I can praise God for life and hope. I can look outward and love. I can share and give. I can serve and support. I can wonder at the many doors God has opened, for every one that’s closed. I can stop wishing for change and change my wishes. Better still, I can fall on my knees and thank God for his amazing grace to me in the Lord Jesus Christ.

My life is not my own. It was given me by God and I was bought at a price. I’ve already died to myself so that I should live to God. And I can still do this, whatever bits of me don’t work! If God gives me days and months and years, then they are for him. To show perseverance in the face of suffering. To exercise faith in the midst of doubts. To offer kindness when I feel mistreated. To be a friend when I’m lonely. When I am weakest, God can shine through in strength.

I can learn from the Word of God…

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. 8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12:7-10)

Sober celebrations

20130316-140139.jpgGrace has organized a team of 24 for the Relay for Life again this year. There are hundreds of people walking, running, hanging around. The theme is:

Celebrate. Remember. Fight Back.

There’s not much to celebrate about cancer. Only last night my very good friend lost his mum after a relatively short battle with lung cancer. It’s a cruel killer. It takes life and twists and distorts it. It ruins other lives and the sadness spreads. It reminds us that life isn’t how it should be. It’s a sign that our world has been subjected to disease, decay, and death and we groan for things to be set right once more.

Last year I walked the survivors lap and felt rather like a fraud. This year I celebrate a year of survival, another year of life. With God’s help, the support of family and friends, and powerful chemo, I’ve been fighting back.

I remember some who are no longer with us. Like my friend’s mum, my wife’s boss, my cousin, a number of friends, and countless friends’ friends.

More importantly I remember that God has fought back so that we can celebrate life forever through Jesus. We might beat cancer in this life but only God can enable us to beat death for eternity. Please turn to him while you have breath!

With love,
Macca

Journey with cancer 13 Feb 2013 – surprisingly good news

It’s been some time since I posted on the progress of the cancer. I guess there hasn’t been much to report. October was the last time I had a scan. The cancer had been stable. I’d been feeling fairly well. In fact, for two or three cycles, the chemo hadn’t knocked me round too badly and I’d only been bed-ridden for a day or two.

During the summer months I’d enjoyed some wonderful relaxing time with the family. We’d been camping at Burrill, enjoying the surf, catching some fish, chilling out in the hammocks, chatting round the campfire, learning to cook cakes in my ‘Shuttle Chef’. I stopped reading books for a while, slowed down on the blogging, played a bit of real life scrabble, and slept lots. We spent a couple of awesome weeks in Sydney house-sitting for friends. During this time I learned to ride a stand-up paddleboard (sort of), helped the kids to learn to wakeboard while I had heaps of fun driving the zodiac on Sydney Harbour. I didn’t even have to interrupt the Sydney holiday because we were able to arrange chemo in Sydney. Then, another week or so camping in Burrill. I had long walks on the beach, caught some salmon, flathead and whiting, cooked some more cakes, and even went out in the surf. For the first time in two years I went out on my bodyboard and caught some decent waves. It was exhilarating! Who would have thought a year ago?! Mind you, I suffered the next two days, as my ankles swelled up in such pain that I could barely walk. But, it was worth it!

Now I’m back at work. I’ve re-joined the team that I built, but in a new role, with new patterns, new responsibilities, and new challenges ahead. I will need to be disciplined in getting rest, taking time off, tuning out from the demands of ministry, saying ‘no’ to opportunities, and staying focused. But I’m excited at the possibilities.

marble-in-hand-cmykOn Monday I had a CT scan to check what was happening with the cancer. I must admit, that I’d been expecting this scan to show growth. It’s over a year now since I began chemo and it’s unusual for people with my cancer to show no progression for this long on this treatment. But, it’s not about statistics. Everyone is unique. And my results stunned everyone. Fiona rang for the results yesterday and we celebrated them over dinner. The tumour had shrunk again. After being stable for months, it had shrunk from 12mm to 7mm! Awesome! I’ve gone from having a marble inside me to having a pea!

peaThe oncologist this morning was smiling! In fact, he was pretty chirpy. They just don’t expect to see further shrinkage once things have plateaued on maintenance therapy. Plus, the neuropathy seems under control. So much to be thankful for.

A miracle? Yes, it is really. I’m not healed, but I’ve been healing in so many ways, and that is very encouraging. Why is this? The right drugs? It seems so. The combination of Alimta and Avastin isn’t that common, but in my case it’s proved to be very effective. It justifies the huge costs of the treatment. Is it good food, reasonable exercise, de-stressing and refocusing on life? I’m sure this has helped. And what about prayer? Can my improved condition be linked to the prayers of so many (I believe hundreds of people) praying regularly for me? I believe it can. I don’t know why, but it’s the mercy of God that I’m where I am today, and I thank him for listening to the pleas of so many. If you pray, please join me in praising God for his kindness and please keep asking him to shrink this cancer to oblivion!

Please don’t stop praying

Having cancer isn’t much fun. From time to time I follow a forum where people share their stories of having cancer, or of caring for those who do. Some of these stories are heartbreaking. The pain, the fear, the loneliness, the hopelessness, the cruel and depersonalising invasion of cancer through the body. Once active, strong, happy individuals, being reduced to feeble shadows of their former selves.

What has both surprised and encouraged me, is how often people are asking others to pray. “I have scans tomorrow – please pray.” “My husband has developed pneumonia – please pray that it will clear up so he can continue his treatment.” “I’m so afraid of the prospect of losing her – please pray that I will be strong.” “My kids are really feeling it – please pray for them” “It’s spread into the brain. I’m so terrified – please pray for me.” “There doesn’t seem to anything left we can do – please pray.”

It’s not just the requests for prayer. It’s also the offers to pray. People will share their struggles and sometimes others reply, saying that they will pray for them. Sometimes people share that they’ve been praying for someone. Sometimes they even share what they’ve been praying.

NTE_prayer_2011I’ve been overwhelmed by how many people have been praying for me. Many of these I know about. Friends, family, people at church. I’ve been amazed to discover that I’ve got a spot in people’s prayer diaries. Some people have told me they pray everyday without fail – and I believe them. Others have said they pray every now and then, when they think of it. Some pray when they get news or when they read this blog. I was remembering tonight, as I visited the NTE conference with around 2000 other people, that 1500 or so students had gathered in small groups to pray for me at the same event last year.

Over this weekend I’ve met four strangers who, upon being introduced to me, said that they (and sometimes their churches) had been praying for me all year. A couple of months back I sat beside visitors at church who, when they discovered who I was, said it was so good to put a face to the name because they’d been praying for me for some time. These serendipitous experiences have been happening all year. What a blow out! So many people have been praying. People I’ve never met, who’ve never met me, but who’ve been moved to speak to God on my behalf. I’ve felt so privileged and have been so encouraged by this news.

Over the years, and even now, our family has also been praying for others with cancer and serious illnesses. We’ve prayed for my dad, Bronwyn, Peter, David, Judy, Nanette, David, Ed, Jenny, Eleanor and others. Some of these people are in remission, others are still fighting, and some have lost their lives. We also remember their families in our prayers. Sometimes I offer to pray for people I’ve met through forums, facebook, or the blog. I try to pray immediately after I make the offer, so that I don’t forget!

Our Heavenly Father is the one who holds our lives in his hands, so it makes enormous sense to speak to him about such life and death issues as cancer. I ask God to heal people, I ask him to heal me, and I ask others to pray for my healing. But I also ask God to work within my heart and mind, to change the way I think and feel about things. I want him to help me trust him, to rely upon his goodness, to treat others with love and kindness, and to hope for eternity in him. God may choose to heal me, and I hope he does, but whatever happens I pray that he will be honoured in my life and others.

So please pray and please keep on praying. Not just for me, but for yourselves, for others, for those with cancer, for their families and friends. And don’t limit your prayers to matters like cancer, even if your whole life is consumed by it. God says we can approach him on any matter. Nothing is too big or too small. So let’s pray, not as a last resort, but because God is more willing to do good in our lives than we are to ask him.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. “Which of you, if his son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!  (Matthew 7:7-11)

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  (Philippians 4:6)

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.  (Hebrews 4:16)

Clearly God is inviting us to pray, but how long should we keep on praying? If we’ve prayed a few times and it hasn’t been answered, do we continue? Jesus prayed three times that God would take the cup from him. Paul prayed three times for the thorn to be removed from his flesh. Does this suggest three strikes and you’re out? Is it unreasonable for me to pray for the same things day after day after day? Is it wrong for me to request your continued prayers if you’ve been praying for a year already?

Doesn’t Jesus say we won’t be heard for our many words? It is true that Jesus said:

And when you pray, do not keep on babbling like pagans, for they think they will be heard because of their many words. Do not be like them, for your Father knows what you need before you ask him.  (Matthew 6:7-8)

It’s not the amount, or the frequency, or the specific words we pray that guarantee a hearing from God. He already knows our needs and invites us to humble ourselves before him. We are to come before God as his dependent children, trusting in his goodness, and seeking his will, as we present our requests. With this attitude, Jesus invites us to persist in our prayers:

Jesus told his disciples a parable to show them that they should always pray and not give up.  (Luke 18:1)

In fact, we could do a lot worse than to follow the example of Ephaphras, who kept working hard to pray for others:

He is always wrestling in prayer for you, that you may stand firm in all the will of God, mature and fully assured.  (Colossians 4:12)

And the Apostle Paul’s faithful persistence in prayer:

For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding. 10 And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, 11 being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully 12 giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light. 13 For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, 14 in whom we have redemption, the forgiveness of sins.  (Colossians 1:9-14)

But did you also notice what these guys were praying about? As huge as cancer is, there are bigger matters still. These are prayers that God will make our lives count, that we will persevere, stand firm, and bear good fruit in our lives. As much as I want you to keep praying for healing for people, including me, who have cancer, I’d ask you to pray for these things even more.

Thank you so much for praying, and please don’t stop!

Journey with Cancer 2 Dec 2012 – What a year!

tilleysTwelve months ago today, I was catching up with good friends in a coffee shop near home. We do it once a year, at roughly the same time, and we’ve been doing it for years. These guys come from Melbourne, Wollongong, Brisbane, Perth, and Canberra. We talk about what’s been going on, we share our plans for the future, and we spend some time praying for each other. Once a year means it’s pretty special and I look forward to our catch ups as a highlight.

As we drank our coffees and shared our news, I knew that something was wrong. I had a pain in my chest and between my shoulder blades. My left arm seemed to be going numb. My left leg didn’t feel right, either. I’d been putting up with it for a while, not wanting to break up our time together, but I couldn’t keep ignoring it. I wasn’t imagining things – something was wrong.

Half an hour later I was in hospital – query heart attack. ECG seemed normal, and nothing on the x-ray, but the CT scan showed that things weren’t right. There was a massive build up of fluid around my left lung and it was suggested that I could have a tumour. Mesothelioma produces symptoms like this and so can lung cancers. Over two litres of fluid were drained out of the pleural cavity. It was almost certainly cancer and it didn’t look good. But how? I hadn’t been a smoker. I couldn’t think that I’d been exposed to asbestos. What was happening?

That was Friday, 2nd December 2011, and a year has now passed. What a year it’s been! I consider this an anniversary of sorts. One year of ‘consciously’ living with cancer. They said that I’d probably had the cancer for more than three years previously, without being aware of it. Now it was making it’s presence felt. Now it was changing, shaping, directing, and even shortening my life. Something the size of a ping pong ball had grown, ruptured, spread, damaged and contaminated me. Stage IV inoperable non-small cell lung cancer. This foreign growth was turning my mid-life into an end-of-life crisis. Or so it seemed. The oncologist said it couldn’t be removed or cured. I’d probably see the next Christmas, but he didn’t offer anything more. My health crashed, my weight disappeared, my life seemed to be fading before my eyes. Many times we doubted that I’d live long at all.

That was a year ago and I’m still living with cancer! While I loathe the cancer, and I’d dearly love God to take it away, I thank God earnestly for the life he’s given me. How amazing to live! I no longer take living for granted. In fact, I don’t take breathing for granted any more. I can’t make assumptions about tomorrow, or next week, or next year. Each day, every breath, is a gift from God. I’ve been reminded of what the Scriptures say:

[God] himself gives everyone life and breath and everything else. (Acts 17:25)

Over this past year, God has been teaching me many things. A big one – and there’s much more to learn yet – is humility. God’s humbled me deeply, to trust in him rather than in myself and my resources and abilities. I’d been such an activist in so many ways. Set me a challenge and I’d have a crack. I tended to know my capabilities and I’d trust them. I’d say that I trusted God, but I suspect that I was often simply relying on myself. I’d make plans, get busy, forget to pray, work harder, and then call out to God if I was desperate. God has shown me that I can do nothing without him, and for this I thank him.

God has taught me to treasure people more. He’s shown me how much I value my family. He’s deepened my love and appreciation for my wife. He’s given me great delight in my children. He’s enabled me to enjoy renewed relationships where they were once strained. He’s brought new people into my life. He’s encouraged me with the love, support, and generosity of many friends. He’s given me opportunity to bless others and to be blessed by them. Thank you God!

God has renewed my desire to know him better. He’s reminded me that he’s the ultimate source of wisdom, and that I must know him before I can truly know myself. He’s gifted me with time to read and reflect and write, and a thirst to do this more and more. In writing, God has caused me to think and learn and articulate. He’s opened my eyes to see the amazing truths of his Word in new ways. He’s given me new understanding. He’s strengthened my delight and confidence in him.

God has taught me to lift my horizons. It’s so easy to be consumed by the things of life. Many of our lives are so comfortable, that it’s hard to imagine wanting for anything else. Many of us enjoy heaven here on earth – or so we think. God has burst this bubble. He’s reminded me that life is short. There’s so much more to life than the trivia that fills so much of our time. God has pushed me to focus on things that’ll make an impact for eternity. He’s lifted my heart and mind, to find my hope in him for eternity, and not in the fleeting things of this life.

Most of all, God has been teaching me to keep my faith in Jesus Christ. Every promise God has made, he has answered positively in Jesus. God has shown himself to be totally trustworthy. I’ve been tempted to doubt this – looking at my circumstances, wondering why, struggling for answers – but God keeps bringing me back to Jesus. God knows my weaknesses. He’s heard my cries. He’s seen my tears. And he keeps pointing me to his Son. Jesus is the proof that God is for me. Jesus is the evidence that God loves me. Jesus’ death is the reason God accepts me. Jesus’ resurrection is my hope for eternity.

I know these things more clearly today than I did a year ago, and for this I thank God. My great desire for my friends and family is that they might know these things too – but without getting cancer or facing difficult trials. To misquote John Lennon, “All I am saying is give God a chance!”

My prayer is that God will deepen my faith in him, my hope in eternity, and my love for others. And I would love to pray the same for you.

My heart was heavy

Today I had my 16th chemo visit for the year. This time it was a sobering experience.

It started well with a ‘chat’ with the parking inspectors about my last visit to the hospital! There were a few comments about my Mo for Movember. I asked the three girls beside me, who were visiting a patient, if they were doing Movember too! And they were! One had already raised over $1100. No they didn’t have facial hair on their upper lip – they each had cute mo-shaped earings. 🙂 I chatted with the nurses about a letter for the parking inspectors, about my first ever mouth ulcers, and about how I planned to have a treatment in Sydney in January. I got hooked up to the drugs and tried to connect my iPad to the new WiFi.

Then I began to notice some upsetting things happening around me. There was a patient who seemed to be quietly sobbing as a nurse consoled her. I thought I heard someone speak about what was happening with her dog. There was a young woman, who didn’t seem much older than 20, confidently having her treatment. Why so young?

But it was the conversation that I couldn’t help overhearing from the other side of the room, that disturbed me most. The man was very frail, in his late 70s I’d guess. His wife sat beside him. The nurses discussed the need to work out a treatment strategy with the doctors. It seemed he had a serious infection – one that he’d had before – and they were working out the treatment strategy. This was decision time for the man.

The conversation went something like this…

“Is there light at the end of the tunnel?” the patient asked.

“Not for the cancer.” replied a nurse. “But there is for the _____itis. We can treat that. We can improve your quality of life.”

“What life?” he said. “This isn’t living. It’s just agony. I can’t do anything. I don’t want to have more treatment.”

“And you don’t have to.” said the nurse. “It’s up to you. It’s your decision. We respect whatever decision you make.”

“I don’t want to have any more treatment!” he protested. “I’m just prolonging the inevitable.”

“It’s your decision. You have the right to choose.” said the nurse.

His wife seemed anxious, “But think of all we’ve been through. Now’s not the time to make the decision. Why don’t we treat the infection and then you can decide.”

The nurse agreed that it wasn’t the time to make such huge decisions, but the patient seemed to have made up his mind. “There’s no point.” he said. “I want to go home.”

“And you can go home,” said the nurse. “But don’t think that just because you told us today that you didn’t want to do anything, that you can’t change your mind tomorrow. You can change your mind any time. And when you get home ring palliative care right away. Right away, okay!”

“We will.” said his wife.

And they left.

This really was a life and death experience, I was witnessing. It was so hard for him. So hard for his wife. I found it hard. I wanted to go to him and talk about life and death and hope and God. But they were gone and I was hooked up in my chair. My heart was heavy. I prayed for them. Then I turned on Eva and closed my eyes.

As I reflect on this again, these words come to mind:

11 “What strength do I have, that I should still hope?
What prospects, that I should be patient?
12 Do I have the strength of stone?
Is my flesh bronze?
13 Do I have any power to help myself,
now that success has been driven from me?  (Job 6:11-13)

“My days are swifter than a weaver’s shuttle,
and they come to an end without hope.
Remember, O God, that my life is but a breath;
my eyes will never see happiness again.
The eye that now sees me will see me no longer;
you will look for me, but I will be no more.
As a cloud vanishes and is gone,
so one who goes down to the grave does not return.
10 He will never come to his house again;
his place will know him no more.  (Job 7:6-10)

Job, too, despaired of his life. I hope that he, and the man and wife in the chemo ward today, know these words of comfort and hope. They’re true for all who will turn to God and trust him. He’s the God who raised Jesus Christ as Lord:

4:18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 5:1 For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Meanwhile we groan, longing to be clothed instead with our heavenly dwelling, because when we are clothed, we will not be found naked. For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed instead with our heavenly dwelling, so that what is mortal may be swallowed up by life. Now the one who has fashioned us for this very purpose is God, who has given us the Spirit as a deposit, guaranteeing what is to come.
(2 Corinthians 4:18-5:5)

Dying, surviving, or what?

How do you describe someone with advanced cancer? A cancer sufferer? A cancer patient? Struggling with cancer? Fighting cancer? Being treated for cancer? Having a terminal illness? Having the Big C?

It’s hard to know really. Is there an etiquette we should follow? In the last week or so I’ve been introduced to others both as a cancer survivor and as someone who is dying of cancer. Sounds to me like two different people!

I’ve found the whole terminology thing awkward for a long time. Earlier this year we joined in the Relay for Life and I was invited to walk a lap of honour as a cancer survivor. Seemed strange to say the least. I wasn’t long out of hospital. I was still coming to grips with my diagnosis. You could hardly describe me as a survivor. I’d only just begun the journey and the prognosis was bad. Surely I’d need to be in remission, have no evidence of disease, or be pronounced ‘cancer free’, in order to qualify as a survivor! Last week I was introduced to a gathering of people with lung cancer – and their carers – as a cancer survivor. It seemed a little more reasonable now. I was still alive and I’m approaching my one year anniversary.

Am I survivor? The reality is I am. I’m still living, breathing, and at this point I’m in better health than I was when diagnosed. I’ll be a survivor until such time as I die. But to be honest, I’m keen to do much more than survive. I don’t want to be defined by my disease. I want to live well – not indulgently – but in a way that honours God and others. I want to have the life and death of Jesus at work in me, to serve others rather than serve myself.

I’ve also been described as dying of cancer. It’s understandable to speak in this way, because it’s potentially the most unique or distinctive thing about me. I’ve been described as ‘husband of Fiona’, ‘father of Luke or Matt or Grace or Marcus’, ‘son of Norman and Ruth’, ‘Pastor of Crossroads’, ‘chaplain to the Brumbies’, ‘keen on fishing’, ‘friend of someone or other’, and lots of less charitable things! At the moment, the characteristic I’m best known for is ‘having cancer’.

But, am I dying of cancer? I’ve been told what I have is incurable. The treatment is not expected to eradicate the cancer. The survival rate over 5 years for lung cancer is only 16%. Few people ever fully recover from lung cancer. Initial diagnosis at Stage IV is seriously bad news. So, am I dying of lung cancer? The truth is that I don’t know. Nobody does, not even the oncologists. People do get healed. God is completely capable of healing me. Will God heal me? I‘ve got no idea! Modern medical options are amazing. They’re discovering new things about cancer all the time. New treatments are being invented at a rapid rate. Who knows what the future holds? Many people die with cancer rather than of cancer. How will I die? High odds on it being the cancer that causes my death, but ultimately only God knows. And I’m happy about that!

The one thing I do know is that I am dying one way or the other. But it seems strange to introduce me as someone who is. After all, we’re ALL dying. It’s not unique to me. I’ve been reminded in this past week of how true this is. There was the sad story of the teenage girl who plunged to her death from the 22nd floor of a Gold Coast building, during schoolies week. Bryce Courtenay lost his fight with cancer, dying in his Canberra home at the age of 79. On Saturday I joined with others in celebrating the life of my good friend, Chappo, who passed away at the age of 82, because his body was no longer able to fight the infections. Another friend has just lost her sister. It may be sooner or it may be later, but we should recognise the fact that we’re dying. We need to take stock of this reality. In fact, a friend reminded me of this again recently, when she asked me what was on my bucket list!

I know it’s awkward, and it’s so hard to know how to say things, but maybe cancer survivor or dying of cancer aren’t the best ways to describe me. At present, I’m living with cancer. But I don’t want that to define me either. Yes, I’m dying, but I was dying before my cancer diagnosis. In reality, nothing has fundamentally changed. Maybe I’ve got a better idea of the time frame, but then I hope that I don’t! I’ve survived so far, thanks to God, but will I survive my cancer? In this life, I can’t say. But I firmly believe that this life is not all there is. Along with Chappo, who’s enjoying his new life now, I look forward to the day when there will be no more death or mourning or crying or pain, for the old order of things has passed away.  (Revelation 21:4) Can I encourage you to do the same?