Five Years

IMG_0542I lay alone in my hospital bed, the words and music of David Bowie filling my headphones…

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

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

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

Five years
Five years
Five years
Five years

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

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

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

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

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

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

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

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

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

I remain NED (no evidence of disease).

It’s a year since I last had chemo.

IMG_2721Time to say “Thank you”.

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

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

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

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

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

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

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

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

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

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

I thank God for my five years!

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

Hope when your child has cancer

Screen Shot 2016-08-31 at 10.45.28 AMThis interview by Dominic Steele with his friend, Andrew Barry, is deeply moving and profoundly encouraging. Andrew’s son has very serious cancer. His situation has moved me to pray for him regularly. In this heartfelt chat Andrew talks about suffering, marriage, family life, work, treatment, salvation and what it means to have an eternal perspective. Take the time to watch it all and grab the tissues! Click on this link to watch the conversation.

Two massive questions faced by those with cancer

Screen Shot 2016-08-18 at 2.31.57 PMSince receiving my cancer diagnosis, many have assumed that my big questions are “Why?” and “What?” Why am I going through this? Why did God let it happen? What did I do to deserve it? What could I have done to prevent it? What specifically caused it?

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

Where am I?

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

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

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

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

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

Who am I?

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

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

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

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

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

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

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

So many reasons to be thankful

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

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

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

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

IMG_2721I described my circumstances to people the other day as like being in a battle zone. Through the years of chemo it was like I was wearing body armour to protect me from the enemy. At the beginning the enemy lines were clearly visible. After I became N.E.D. it changed to a fight against a hidden opposition—like terror cells that can pop up anywhere. I didn’t know where or when or how the enemy might appear, what shape it might take, or what it might do to me. My oncologists believed the enemy remained real and would seek any and every opportunity to attack. So the body armour was essential—I was urged to stay with the chemo indefinitely. The strategy was vigilance, protection, prevention.

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

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

IMG_2716I want to honour my family for supporting me on this long and often painful journey. It’s been hard for them and I owe them a huge debt of gratitude.

Like my tee shirt?

Relay number 5

IMG_0412
2015 Relay for Life

Tomorrow I walk around the AIS track with the Cancer Council’s Relay for Life for the 5th year in a row. Every time I have walked as a survivor. The first year I went very reluctantly, feeling that I wasn’t much of a survivor. If you’d told me then I’d be walking the track again 4 years later, I would not have believed you. But here I am—thankful to God for another year and another opportunity.

This year I’m hoping to give away as many copies of Hope Beyond Cure as I can. My desire is for people impacted by cancer to know that there is real hope to be found. I’m keen for conversations with survivors and carers. I’m keen to walk alongside others going through similar trials and difficulties.

I’m also working hard to raise support for the Cancer Council. There are over 200 relays around the country each year and they are the major fundraiser to help people affected by cancer.

If you would like to support me doing the relay tomorrow, you can donate online by clicking here.

My story

Screen Shot 2016-02-21 at 5.17.44 PMThis month the Lung Foundation Australia are aiming to change how people view lung cancer. They’ve asked me, and a bunch of others, to share our stories. You can view the video of an interview with me here. Lung cancer can impact anyone. While smoking remains the leading cause of lung cancer, more and more people are getting this disease who have never smoked. It continues to be the biggest cancer killer in Australia. Sadly, most people are probably like me in thinking it could never happen to them. If you can breathe then it can. If you’re struggling to breathe, or experiencing pain or discomfort that you don’t recognise, then speak to your doctor. Early diagnosis rapidly improves people’s chances of survival. Thank you Lung Foundation for all your hard work and support to so many.

Good news scans

IMG_1783Yesterday I had a routine CT scan to check on any progression of my cancer. Thank God, there was no change. I remain NED! While this has been the pattern for some time, these results were especially encouraging because I haven’t had chemo since last November. I am taking a longer break from chemo to give my body and mind some reprieve. The constant barrage of toxins over the past 4 years has taken its toll.

Today I revisited my treatment strategy with my oncologist. Once again I was encouraged to not assume that I am healed and to return to the IV chemicals every three weeks. The advice was expected, and I can understand it from the doctor’s viewpoint. Why mess with success? The question is at what cost? Mind you, the alternative approach is also at what cost? If I give up on the chemo, and the cancer remains in my body, am I surrendering the advantage to the enemy.

And where does trust in God come in? I believe that God is powerful and loving. I trust that he can and does heal people. But has he removed my cancer completely? Does it display greater faith to go off treatment or to go back on treatment? Some people assume that God is the explanation for what cannot be explained. If we can explain it, then that can’t be God. But I don’t think this way. I believe that God has ordered this world in such a way that we can use our minds, talents, training, research, and skill to accomplish God’s good purposes. I will thank God for miracles and I will thank God for medicine.

I believe that I can and should trust God—whatever happens to me. God has demonstrated that he can be trusted in Jesus Christ. Jesus died and rose to bring me forgiveness and life, hope and eternity. I don’t know what the future holds, but I do know God, and I know that he knows.

For now, I plan to remember that life is short, so I’d better not waste it. I’m NED (no evidence of disease) but I’m still terminal—we all are—so God help me to make the most of this life that you’ve given me.