And don't come back

Today I had my final oncology check up, at the end of which, I was told "don't come back (unless your GP thinks you need to, of course)". It was quite a milestone and I've posted some reflections on it over on my main blog.

How the light gets in

Earlier today, I heard about Kristian Anderson, another Christian Sydneysider in his 30s with young children and a wife. He died today after more than two years of treatment for bowel cancer. I have just finished reading his blog. I am now out of tissues.

On supporting a friend with cancer

Over on my main blog I have posted a reply I wrote to one of the many people who have asked for advice on how to care for a friend who has received a cancer diagnosis.

One in a million? So why me?

The GP I saw last week (concerning my 'flu and chest infection) wasn't my usual one, so I had the same conversation I have with every medical professional who has read my history for the first time. First they don't believe that I'm not (or wasn't) a smoker and then they tell me how unusual I am. I've been meaning to ask someone who might have a clue just how unusual (statistically) this actually is. Am I one in a million? Or even less common than that? My Australian oncologist (who was the most senior figure in the department of a large hospital) said he'd never seen or heard of any analogous cases. The GP last week said that even if I had been a "champion smoker" since being a teenager I would have been desperately unlucky to have ended up with my cancer at that age.

This raised for me an issue that I deliberately put aside early on, namely, the cause of my cancer. If I am really so rare, am a just a total fluke or were there certain triggers in my genes and/or and environment that are to blame? My decision early on to avoid attempting to answer the scientific question of causation was based on asking a few of the top experts and finding they had no clue whatsoever, especially given my lifelong failure to consume even a single tobacco product (except second-hand, of course, which comes free of charge, though perhaps not of consequence). So I figured that if the experts had nothing to suggest, then my own search would likely prove either fruitless or a source of paranoia (rather than finding one cause, I would be likely to find hundreds of potential culprits, namely the carcinogens scattered throughout modern life that are almost impossible to avoid). I simply said to myself, "I am a man of cancer and I live amongst a people of carcinogenic lifestyles".

Theologically, based on the books of Job and Ecclesiastes and also John 9, I affirmed that the consequences of particular sins do not always fall on the wrongdoers, but that there is a tragic element to the world's brokenness in which suffering is unevenly and unjustly distributed. Not that any are innocent of wrongdoing, but many who suffer are innocent of the wrongdoing that caused or contributed to that particular suffering. Thus, asking "why me?" is often not a very productive question.

There is of course far more to say about this, but the comments from my GP briefly opened these questions and let me think again about why I had put them down again.

Three and a half years on

In other news, it's been about three and a half years since I finished treatment and there has been no sign of any relapse, for which I praise God! I saw my oncologist a few days ago and am now only going to have appointments every six months, which will cease if I make it to five years.

Jessica and I were reflecting again with some Australian friends who visited recently that coming to Scotland was a very effective way of "moving on" from my period with cancer. We arrived to a situation in which I was no longer being asked about my health every day and where people didn't look at me and immediately think of cancer, loved ones they'd lost, their anxieties for those still ill, and their own mortality. Although these connotations often opened up some deep conversations, it also closed down other ones. It has been nice to no longer be a walking reminder of our mortality and to be a mere mortal again.

(Now people look at me and think of birth instead of death!)

Still Not Dead

Today I finally saw an oncologist weeks after having my latest scan and he said that there were no problems to report. Next scan is likely to be another year or so away, though I will continue to have physical check-ups every three months. It helps if you are not ticklish for these!

I've now been clear for over two years and I no longer regularly think of myself as a cancer patient (even when I was very ill I tried to not let this become the primary description of who I was). For life and ongoing good health, I remain very thankful. Indeed, Jessica and I still begin each day (more or less) with the call and response from Psalm 118.24: This is the day that the LORD has made. Let us rejoice and be glad in it/him! Sometimes it is said a little grumpily or with a yawn, but the repetition is good for our hearts.

Even though I have been feeling much better (or perhaps, have been taking my good health for granted again), I have recently been thinking some more about what it means to die well. Here are some thoughts on the common phrase "dying with dignity".
This picture was obviously from a couple of months ago, since the temperature for the last few weeks has sat around a balmy 10-14ºC.

Attitude doesn't affect relapse

When it comes to cancer, it seems everyone is an expert. Once my diagnosis became public, scores of people wanted to make their suggestions about how to cure it. I received numerous books, talks, websites and pieces of well-meaning advice from concerned friends and acquaintances about various diets, miracle-working healers and the psycho-somatic effects of a positive attitude. While it was lovely to have so many people concerned for my welfare, I took most of the suggestions with a grain of salt or three. If even one in ten of the claims I encountered was true, it's a wonder cancer still kills anyone at all.

Of course, cancer touches so many lives, directly and indirectly, and we can feel so powerless in the face of it. So it is natural for us to wish to share the lifestyles and strategies of those who survive with people we love when they are facing a similar situation.

In any case, of the most frequent pieces of advice I received was about the importance of a positive attitude. While I do think having an ultimate hope for God's new world made and makes a difference to whether I bother getting up in the morning, it seems that attitude doesn't affect your chances of surviving cancer.

This might seem like bad news, but the illusion of control is a myth in all areas of life. We live our lives out of control. That is part of what it means to trust God.

Whole days now go by...

...in which I don't think of cancer. Of course, I'm still within the two year period during which relapse is most likely and I signed forms acknowledging that I accepted the risks of chemo and radiotherapy, included in both is (ironically) an increased risk of cancer. Nonetheless, being sick no longer dominates my existence as much as it once did and for that I am thankful. I never wanted to let staying alive become the main game.

Cancer (hasn't) killed the radio star

Sorry for the title, but Jessica and I will be interviewed by Bishop Robert Forsyth on 2CH (1170 on the AM dial) at 10 pm Sunday night (after the news). We'll be talking about our experiences of sickness and hope over the last six months or so. Can't say I've ever listened to that station myself (I rarely listen to any radio), but in case you're not already sick of hearing me talk about being sick, then this is another chance.

UPDATE: For those out of Sydney, you can listen online. H/T Jason Goroncy.

Recently

Over the last few weeks, three friends have been diagnosed with different forms of cancer: lymphoma, leukemia and breast cancer. Two of them are younger than I am!

Thanksgiving reflection

Saturday morning was a service of thanksgiving. It was a wonderful time, with around 150 friends and family members joining together at All Souls to thank God for all his goodness. I'll write more about the service at some stage, but for now, I thought I would post the text from my reflection. A number of people asked for a copy and so I thought I'd make it generally available. Many of the ideas were taken from posts on my main blog over the last few months.
---------------------------------------------
It’s great to be here today.
It’s great to still be here today!

Death sucks
Our church signboard just out here on the corner recently caused a stir with a message of just two words. Tim and I were called up by the local paper, The Glebe, which ran a short article on the sign. Numerous parishioners were asked about it, or overheard animated conversations as people walked past. It made it into column 8 of the Sydney Morning Herald. It even attracted the attention of a local graffiti artist, who wanted to express disagreement. The two-word message was simply this: Death sucks.

When I first received the diagnosis of cancer back in December, this was precisely how I felt. Life is a good gift from God, and so death, which ends that gift, sucks. I had no desire to die. And as my situation developed and my symptoms got worse, it was not just death, but all that led up to it and anticipated it, that also sucked. The loss of good things in life, the loss of easy breathing, the reduction of strength, the decline of my voice, the coughing, the compromise of physical comfort, the loss of a full night’s sleep - these too were all causes of grief. And even once treatment began and progress was being made in reducing the tumour, I still regretted the side-effects of treatment: the constant needles, the lessening of mental concentration, the confusion of memory, the swollen feet, the suppressed immune system, the burned and itchy skin, the painful swallowing, the perpetual tiredness. And this is before I mention the social effects: telling people that you have cancer means that for some people you become a walking symbol of their fears and regrets, a constant reminder of their mortality.

Psalm 116
All these things have been part of my experience over the last few months. And now that they’re gone, and the possibility of imminent death has retreated somewhat, I am very thankful to God. Just like the psalmist in the passage Celia read (Psalm 116), I called on the name of the LORD: “O LORD, I pray, save my life!” and the LORD dealt bountifully with me. For he delivered my soul from death, my eyes from tears, my feet from stumbling. I still walk before the LORD in the land of the living.

Why?
God healed me. Through the doctors, through the chemotherapy, through the radiotherapy, through the prayers and love of many here, through his design of a good human body, through his life-giving Spirit, God healed me. Why? Like the psalmist, all I can say is our God is merciful.

Why me and not others? It would be tempting to give all kinds of answers to that question. But the truth is, I don’t know and don’t think anyone does. I know this, however: it wasn’t because I had more faith, or because I deserved it. Life is an unmerited gift. We can only accept it, and give thanks.

And so I thank God. I also thank God for all those through whom he has loved me over recent months: Jessica, my brothers and sisters here at All Souls and also at Barneys, all my relatives by blood and marriage, our friends, and even many whom I don’t know well directly, but who have been praying for us and generously giving love and support in all kinds of ways. Jessica and I thank God for all of you. I thank God that I’m alive to enjoy knowing you and being known by you.

It is a good thing this is not a funeral today. Death sucks. Life is a gift and for that we thank God.

But wait, there's more
But there is more to be said that this. It would be a shame to leave our reflections there and not dig deeper into this experience I’ve had and which so many of you have shared. Because what might we say if this was a funeral? What might we say if I go for my next scan in another month, or six months or six years, and the tumour is back, worse than ever?

The great taboo
Our culture doesn’t seem to know what to do with death. People seem to oscillate between denial and obsession. On the one hand, for most of the time, we live as though we won’t die: we arrange things so that the dead and dying are kept out of sight, out of mind; we stay busy and avoid silence in order to minimise reflection; we politely change the topic after an awkward silence if death does come up - as though we were trying to fool ourselves that it just might be possible to get out of this life alive. Yet, on the other hand, we’re obsessed with death: we spend billions of dollars each year on crisis healthcare, we demand doctors do everything in their power to keep us alive. To my mind, both denial and obsession seem to indicate that deep down, we’re terrified of death.

We pursue riches partially so we can try to insure ourselves against dying. We try to chase away terrorists with ever-tougher laws because we’re happy to pay any price to avoid the possibility of being killed. And when we do think about dying, we want our death to be quick and painless, we want a sudden death, to not know that it is coming so that we need not live in fear. Sometimes, it feels like this is almost the only thing left uniting our fractured society: we all share a fear of death.

Worse than death
But there are things that are worse than death. There are things more important than simply staying alive. And so while I have always wanted to do things that help me survive, I don’t want that effort to dominate my life and thought.

Why do I think there are things worse than death, things better than life? Because Jesus seems to have thought so too. He loved life as God’s good gift, but for Jesus, trusting and obeying the giver came before preserving the gift. When faced with the choice of obedience or survival, he prayed ‘not my will but yours be done’. He could have run. He could have kept his head down. He didn’t have a death-wish – he knew that death sucks. But he also knew there was something worse than death: a life that failed to trust God.

Death is bad, but untrusting anxiety, apathetic lethargy, bitter regret, faithless betrayal: these are the real enemies of God and humanity. These will blunt and bleed the soul, poison the spirit, and stop the heart more surely and grievously than the cessation of brainwaves and breath.

Bitterness, fear, apathy
For me, this was brought home sharply a day or two after getting the results of my first scan back in December. I clearly remember travelling home and realising that the more sinister danger facing me was not the wayward growth of cells in my chest, but the potential growth of bitterness or fear or apathy in my heart.

I could see myself becoming so fixated on my problems that my grief might sour into resentment, blinding me to all the good things with which life is filled, many of whom are sitting here in front of me. I could be so scared of what might happen, of pain that might come, of losing more abilities, so scared of missing out on the rest of my life that I could fail to live that life. Poisoned by bitterness, paralysed by fear, I might then give up and sink into apathy, losing the will to care about anything beyond my immediate physical needs.

These were the real dangers. To shrink into bitterness, fear and apathy would have been to lose part of my self.

Thankfulness, hope, love
But there was another option. Instead of bitterness, I could give thanks for all of God’s gifts. Instead of fear, I could place my hope in the God who raises the dead. Instead of losing myself in apathetic self-centredness, I could discover who I really am by loving and serving those around me.

Thankfulness
God has given me so much: not only life and breath, but new life by his Spirit; not only a loving family and wonderful in-laws, but brothers and sisters who share the same Father in heaven; not only the best wife I’ve ever had but a saviour who gave his life for mine. I am blessed and double blessed. How can I not be thankful?

Of course, all these good gifts and many others don’t mean I don’t grieve. I do. One of the saddest moments for me was back at Christmas, when my two and a half year old nephew asked me to sing with him ‘Jesus loves me this I know’. I tried and nothing came out. I’m sad that my voice isn’t able to sing as I’d like to. I’m sad that plans and dreams have been put on hold. I’m sad that many others - including many of you here - have suffered far worse for far longer than I ever have. Yet avoiding bitterness doesn’t mean minimising or ignoring the darkness. The thanks and the grieving go together. This is because giving thanks is already an act of hope. I can give thanks even in the midst of disappointment and heartache, not because I think the pain is good, but because I know something of God’s future.

Hope
God raised Jesus bodily from the dead, as we heard in our second reading (Luke 23.50-24.9). Jesus overcame death. To speak of this resurrection doesn’t mean Jesus or his spirit went to some afterlife with God. This would simply be as though death were being redefined – you think he’s dead, but really he’s in a better place. No, the tomb was empty – why seek among the dead for one who is living once more? God didn’t rescue Jesus from death; he rescued him from out of death. He was given life again after the grave. Bodily life. Life in every sense of the word that we mean – and more.

Jesus’ resurrection shows that God hates death, and his solution is not transferring us to another world, but to renew this world, to resurrect dead bodies to new life beyond even the possibility of death. God’s promise is that those who find their lives turned upside down by Christ will also experience a resurrection like his. In fact, God will renew his entire world.

And because of this – why fear? God is thoroughly committed to his world. He has demonstrated his love for us in that Jesus died to reconcile us. He has demonstrated his power in raising him from the dead. He given us a taste of this in pouring out his Spirit upon those who belong to Christ. His project of renewing creation has begun. So I live in hope, not fear. Not hope that God will rescue me from death, but hope that he will rescue me – and all his good creation – from out of death. Hope that he will finish the job he began in Jesus’ resurrection. Hope that death will not have the last word. Hope that I will not be overcome by evil, but that evil will be overcome by our good God, who raises the dead.

And not only does this hope make sense of being thankful, despite all that is wrong with the world, it also highlights just how wrong the world is. If death was the end, we mightn’t like it, but we’d just have to get used to it.

Instead, being hopeful makes me less content with how things are now. Paul talks about groaning and yearning for the day when God raises the dead. Jesus himself said blessed are those who mourn, who hunger and thirst for things to be right. During the most painful parts of treatment, I would repeat to myself these beatitudes. Blessed are the poor in spirit, for they belong to God’s rule; blessed are those who mourn, for they will be comforted; blessed are the meek, for they will inherit the earth; blessed are those who hunger and thirst for things to be right, for they will be filled. Jesus is basically saying that if you don’t like how things are now, and so join God’s protest and renewal movement, then you are blessed, because renewal is indeed coming. The dead will live again.

Love
And this is why love makes more sense to me than apathy. If God’s project of life wins over death, then every life really counts, every person is of inestimable value, every act of service is divine. I can pour myself out for others, enjoying them without needing to protect myself.

Thanksgiving, hope, love: none of these are about cutting myself off from the world or ‘being philosophical’. None of them are about just trying to be positive. They all rely on what God has done in Jesus and on his promised future.

Theology and experience
When I was thinking about what to say today, a good friend suggested I talk more about my experience and my feelings than theology. The more I think about it, the more I find the two can’t be separated. How we feel, how we experience adversity and prosperity, how we react, are all inseparable from who we think we are, and ultimately, who we think God is.

And so every day each of us faces this question: Will I look back on the past with bitterness or thankfulness? Will I face the future fearfully or with hope? Will this moment be one for uncaring self-indulgence or joyful loving service?

[Let’s pray:]
Thank you Lord for you are good, your steadfast love endures forever. This is the day that you have made; let us rejoice and be glad in it! Amen.

Thanksgiving service

Give thanks to the LORD for he is good;
His steadfast love endures forever!

- Psalm 136.1

Personal update and an invitation
We've now had a week or so for the good news of the latest scan to sink in. After initially finding ourselves exhausted and relieved, we're now starting to look ahead to a life of new and renewed possibilities. Before we get there, however, it is appropriate to mark this point in our journey with gratitude for God's goodness to us through so many people. And so we would like to invite you to a special service of thanksgiving.

Saturday May 19th, 10am
All Souls Anglican Church, Leichhardt (cnr Norton & Marion Streets)
Morning tea will be provided following the service.
RSVP would be appreciated. All welcome.

From here, I will continue to have scans every few months for at least two years. I will post any further updates on this blog. Thank you for your support, prayers, love and generosity. God has blessed us so much through you all.

We've been reminded that life is so much more than the abundance of possessions, as Jesus says - indeed, it is more than the abundance of health. Our society often seems obsessed with health; could this be an expression of a deep fear of death? The Christian hope is not simply to avoid dying for a little longer (as good as that is!), but for death itself to be overthrown in resurrection.

May God fill you with hope and joy because Jesus is risen, and so the end of death has begun.

Update: 22nd March

Taste and see that the LORD is good;
blessed is the one who takes refuge in him."

- Psalm 34.8

God is faithful in times of prosperity and adversity. We continue to be so thankful for all the good things we receive from his hand.

CT scan
Yesterday I had my first post-treatment scan (a CT scan) to begin to determine the effectiveness of all the chemotherapy and radiotherapy I received in January and February. The results were very encouraging. There were no secondary growths (i.e. the cancer has not spread) and the primary tumour had shrunk to about a quarter of the volume it was back at the start of December when I was first diagnosed (the only other time it was measured in a scan). On 1st December, it measured 35 mm by 30 mm by 25 mm but yesterday it was 25 mm by 17 mm by 16 mm - a very impressive reduction. The radiologist who reviewed the CT scan was also impressed at the comparatively minimal damage done to the surrounding area (esp lungs) by the radiotherapy.

However, yesterday's scan does not reveal whether this residual mass is merely scar tissue or active tumour. To find out, we need to wait another month to continue to allow the radiotherapy to have maximum effect and then I will have a second, different scan (a PET scan) to measure cell activity. More waiting - no wonder they call us 'patients'!

Side-effects
After finishing radiotherapy just over a month ago, I have been recovering from the various side-effects and feel as though I am well past half-way (though not yet 100%). I still have less energy than I used to and am still expanding the kinds of food my oesophagus can tolerate. For much of this month, I have been on a liquid diet but have recently been enjoying food with more substance.

Voice
My voice, though a little stronger than it was a month or two ago, continues to be quite different to what it once was. It is likely that this will be a permanent issue since the damaged nerve that controls my left vocal cord may never recover. However, with some speech therapy over the next couple of months I might continue to gain a little more volume. I am able to preach and give talks using microphones, but conversation in noisy contexts is very difficult, as is singing - a loss I frequently mourn.

Church
Apart from these factors, Jess and I have been well. We are both enjoying our work, as well as the extra time we've had to rest and recover while both being part-time. We are settling well into our not-quite-so-new church at Leichhardt and have started a couple of small groups for people our age, which have been very encouraging.

We have really appreciated all the generous support from so many: gifts, practical help, people willing to listen, and a constant supply of food and prayers. God has given us all we need and so much more!

Prayer
For those who pray...
Give thanks:

• for God's generosity towards us all: giving us life and every good thing, especially his son.
• for the love and support we have also received from church, family and friends in a variety of forms.
• for the good result on yesterday's scan, and how far we've come on this little adventure since the start of December.

Pray:

• that the remaining mass will be all scar tissue and not contain any active tumour cells.
• that while waiting for a more definitive result next month, we will be patient and thankful for each day, without anxiously grasping after an answer or deferring our lives.
• that I might continue to regain strength and would use this to serve the God who loves life.

Update: 19th Feb

End of radiotherapy
Praise God - I have reached the end of this treatment cycle! I have just returned home from my final day of radiotherapy (#33) and last Wednesday received my 7th and final doses of chemotherapy. I am exhausted and in many ways at the lowest point I have reached physically, but remain filled with hope and feel great relief, since the next few weeks should involve gradual recovery. Since radiotherapy will continue to affect my body for the next couple of months, it will be many weeks before the effectiveness of this treatment cycle can be determined. I will have a full CT scan in a month (which will reveal how much of the growth remains) and then another full PET scan in about two months (which tests whether it is still active). We are praying that the growth will have entirely disappeared . However, it is more likely that a scarred area will still show up on the CT scan. If so, we're praying that it is no longer active.Side-effects
As for side-effects, the radiotherapy has really overtaken the chemotherapy in the last couple of weeks. Not only am I even weaker and more tired than ever, but recently it has become increasingly difficult to swallow due to radiation burns to my oesophagus. For the last week or so I have been limited to fluids (water, juices, thin soups, melted ice-cream (thank God for small mercies!), special dietary supplement drinks, yoghurt and the like) and even then require painkillers and an oral anaesthetic (which I gargle before meals) to get things down. It's not much fun. But this level of discomfort is only likely to continue for another week or two. I am now glad that I put on so much weight in December!

God is good
Each morning, Jessica and I wake up and remind each other "This is the day that the LORD has made", to which the other replies "Let us rejoice and be glad in it!" (Psalm 118.24). Despite not being able to do all that I once could (and might, God willing, one day be able to do again), life is good, very good. We are so blessed by the generosity and support of family, friends and strangers, by having a beautiful new church family at Leichhardt where God is clearly at work, by living in a country with a (largely) functioning medical system, and by having a sure hope that as we have died with Jesus to our old lives, so we will also rise like him when God makes all things new.

Work update
Jessica continues to enjoy her social research position at St Leonards and the occasional continued support she can offer to the EU Graduates Fund (where she was working for the last few years). Our time at All Souls, Leichhardt has started well. We have met many people, welcomed a number of newcomers even more recent than us and started a weekly small group for 20-30s. I have also preached twice (sermons can be downloaded here), led some services, done a little reading, begun planning a few outreach events in coming weeks and attempted to keep the church and many of you in my prayers.

Prayer
Speaking of prayer, here are some suggestions for those who pray.
Give thanks:

• For reaching the end of this treatment cycle and for its apparent effectiveness.
• For Jessica's thoughtful concern and love as primary carer. Also for the many others who give their time, energy, friendship, food and prayers in support.
• Because our Father is faithful, because Jesus' blood never fails, because the Spirit blows with the promise of a new age.

Pray:

• That the treatments will have been effective, that God will have used it to bring complete healing, that the test results will show only scarring and no active cancer anywhere in my body.
• For patience with eating difficulties and that I'll be able to maintain adequate nutrition despite limited options and little desire to eat. Also for patience and peace as we wait the next few weeks for results.
• For energy when I need it and the ability to rest at other times. For Jessica to also have good rest during this time of stress.
• For the new small group at All Souls, that it will be a place of life and peace, where we speak the truth in love to one another, welcome newcomers and care for those who are struggling.

Update: 8th Feb

Second Last Chemo
We can see the light at the end of the tunnel, at least for this cycle of treatment. After six weeks of chemotherapy, there is only one more to go (and about ten more weekdays of radiotherapy). Yesterday's treatment went smoothly. I had an earlier appointment than usual and so managed to beat some of the usual rush and be home by 2 pm. I also felt more able to concentrate and so managed to read with more concentration (that's some Kierkegaard photocopied on the table in front of me in one picture). I've included some images to give something of a feel for the space. The huge dose of steroids they give me to avoid another reaction did mean that when I woke in the middle of the night, my brain was very active and I spent an hour or two writing down ideas. Hopefully, I'll get better sleep tonight once the effects have worn off.

Symptoms

What effects does the cancer have? How does it feel?
The direct effects of the cancer are sometimes a little difficult to distinguish from side-effects of the treatment, however, there are a few clear symptoms of the cancer itself.

Voice
The first one to appear and which ultimately led me to getting the scan that discovered the growth was that I lost my voice back in October. At first, I had put this down to stress from a number of sources, but after a couple of months, I thought it was time to get it checked out. My voice had almost entirely disappeared within a week and then gradually came (partially) back. By having a tube stuck up my nose and down my throat (nasal endoscopy), it was discovered that my left vocal cord is paralysed in the 'off' position. In order to make a noise, my right cord has learned to compensate somewhat and so I do have a small voice. Importantly, I am not damaging my voice when I speak, so please don't feel guilty about making me talk. Furthermore, the growth is not in my throat, it is in my chest.* The effect on my voice is because the growth compresses (or has possibly taken over) the nerve that controls one of my vocal cords. This effect may well be permanent, since the radiotherapy is likely to destroy whatever might be left of that nerve. However, with speech therapy I may be able to recover some more voice than I presently have. Unfortunately, I don't think I will ever sing again as I once did. This is one of the saddest things about the whole affair so far. Please pray for my patience in expressing myself with less noise and ease than I once had.
*There seems to be quite some confusion over this, with many people asking me about my throat cancer.

Breathing
A second symptom of the growth itself was that since it had partially grown into my left bronchial tube (near the base of my windpipe/trachea), less air was getting into my left lung. When combined with some mucus build-up around the site of the growth, this would leave me quite short of breath upon even mild exercise (walking up a few stairs, walking above a dawdle) and often coughing quite vigorously. This symptom did not really develop until a week or two after diagnosis on 4th December, though by the end of December when I started treatment, I would often wake up at night to discover that I was only breathing on one lung. It was the severity of this effect that led to my chemotherapy treatment being started a week earlier than originally planned. Sometimes, the coughing would also lead to coughing up small quantities of blood as the tumour would get irritated by all the air movement. Since beginning treatment, my breathing has rapidly improved and now I notice almost no difficulty breathing. I still cough up quite a bit of mucus, but this is more due to side-effects of chemotherapy attacking the lining of my trachea than to the tumour itself. Praise God for the rapid effectiveness of the treament on this particular symptom!
Back to FAQ.

Cause

How did you get it?
No idea. I am not a smoker; I have not spent significant amounts of time in mining towns or around asbestos; I am only 28 years old. They are not even sure whether it started in my oesophagus or my trachea. I am a very unusual case and there are few parallels. All this makes prognosis very difficult because there are just not enough other similar cases to make statistical likelihoods very illuminating. Of course, if you do know of others with similar cases, I'd love to hear about them.
Back to FAQ.

Diagnosis

What do you have? What's the story? How big is it?
I have a primary squamous cell carcinoma of the upper aero-digestive tract. For those less medically inclined, let me explain each part. It is a carcinoma, generally known as cancer - a malignant tumour measuring 3.5 by 3.0 by 2.5 cm in size (or at least it did on 4th December. Hopefully it has already begun to shrink with treatment).

How many growths are there?
It is a primary tumour, which means that this growth is the original one. Left unchecked, it would spread to my lymph nodes and then to other parts of my body through a process called metastasis. Fortunately, we seem to have found it before this deadly self-reproduction had really got underway. However, in late December before I started treatment, my oncologist did find some a small tender lump in one of my neck lymph nodes. This seems have disappeared with chemotherapy. Similarly, a PET scan in mid-December discovered a few other possible secondary growths, though these were inconclusive and too small to treat with radiotherapy. The hope is that chemotherapy will have mopped them up.

What kind of cancer?
It is a squamous cell carcinoma, which refers to the kind of body cell in which the growth originated. Cancerous growths are normal body cells gone wrong, which start to reproduce themselves much faster than they ought and without reference to surrounding tissue. If this happens in or near a vital organ, it will eventually be fatal as that organ is taken over or crushed by the new growth. Malignant growths are those that also send out more cells into the rest of the body and begin to reproduce themselves elsewhere. By definition 'cancer' means malignant. Some tumours are 'benign', and just stay in one place (this can still be dangerous or deadly in some locations), but they are not generally called cancerous. Squamous cells are the cells that form linings inside the body, particularly in the oesophagus (food pipe) and trachea (wind pipe).

Where is it?
It is in my upper aero-digestive tract. This is a deliberately ambiguous classification since they are still not sure if the tumour began in my oesophagus (more common, but less likely in my case, given biospy results) or trachea (rare for a 28 year old non-smoker). The growth is located between these two tubes and grows into the base of my trachea, in my left bronchial tube (connecting the trachea with my left lung), partially obstructing it (this had been making breathing difficult until recently). It is a few inches above my heart. If you draw a horizontal line between my armpits, it is located on the left side about a third of the way across my chest. Please note: despite my voice being affected (and how we first discovered the growth), it is not a throat cancer, nor is it a lung cancer.

Can they operate?
No. Or at least not for now. Not only does it presently impinge upon two vital tubes already mentioned, worst of all, it is snuggled under a loop of the aorta (main artery exiting the heart). It is also hiding behind a rip, blocking clear access from my back. There may be some chance of surgery once it has shrunk from the combined chemo-radiation that forms the core of my medical treatment.

How serious is it?
Very serious. The rapid onset of symptoms seemed to indicate that it has not been around for long and was acting very aggressively. The speed with which I was given treatment indicated the pressing need for action. The possibility that it was already spreading (see above) also shows that it meant business. No one has given me a definite prognosis, as the rarity of my age and condition means that statistics are too scarce to make even an estimate. We just live each day as a gift, with hope in the God who raises the dead - and who also sometimes heals the sick.
Back to FAQ.

FAQs

Here are links to various topics I am often asked about:

Blog title: what does it mean?
Breaking news: what's the latest update?
Diagnosis: What's the story? What do you have?
Cause: How did you get it?
Prognosis: Is it terminal? How long do they expect you to live?
Symptoms: What effects does the cancer have? How does it feel?

This list is still under construction - I will be adding more content over the coming days and weeks. Please be patient, though you can let me know in comments if you have questions you'd like answered.

Introduction: read this first

Welcome & blog introduction
Welcome to my second blog. My main blog, nothing new under the sun, is for general personal and theological reflections, links, commentary and discussion. Please come over, check it out and join in sometime. This new blog is specifically for personal and health updates, frequently asked questions about my life with cancer, prayer points and discussion. Feel free to browse and make comments, even if you don't know me personally. Latest updates will appear at the top of the page as things develop.

About me
I am a twenty-eight year old Christian from Sydney, Australia recently diagnosed with cancer. My wife Jessica and I live in Camperdown and from this week will church at All Souls Anglican Church, Leichhardt, where I am beginning work serving part-time as a lay ministry assistant (we have just moved from St Barnabas' Anglican Church, Broadway), having recently completed a four-year Bachelor of Divinity from Moore Theological College.

Initial signs and diagnosis
Back in early October last year I began to lose my voice (mentioned here and here). It was a very stressful time at college and personally and so for many weeks, I simply rested my voice and waited for it to return, unfortunately missing some speaking engagements and mercifully giving my classmates more chance to speak.

However, after a couple of months, exams were over and life was slowing down, but my voice hadn't fully return so I went to get it checked out. A nasal endoscopy quickly discovered that my left vocal chord is paralysed, greatly reducing my volume and range. A CT scan the next day was intended to rule out one possible cause: a compressed nerve. This scan discovered a growth (3.5 by 3.0 by 2.5 cm) in the middle of my chest, extending between my oesophagus and the base of my trachea, and growing into my left main brochial tube, partially obstructing my breathing. I received this news on the 4th December and so regular readers might realise that all the posts since here are coloured by this news.

Weeks of tests and hospital visits ensued, at the end of which it has been determined that I have a primary squamous cell carcinoma of the upper aero-digestive tract. There are no secondary growths (praise God), but as it presently stands, the tumour is inoperable, being trickily located at the junction of primary tubes for food, breath and blood (aorta).

Treatment
I began chemotherapy on 27th December and had my first radiotherapy session on 2nd January. I am physically tired and sometimes have difficulty concentrating, but am generally quite well. My breathing, which had been getting progressively more difficult throughout December (and which was affecting my energy and sleeping), has eased even in the last couple of days - another reason to rejoice.

Reaction
It's hard to say exactly how Jessica and I are feeling, because there are many aspects to the experience and the last few weeks have been such a whirlwind of responses and new challenges. There is shock at the ugly presence of sickness and wrong in God's good world. There is sadness at lost or delayed plans. There are bouts of some anxiety and uncertainty, mixed with pragmatic necessities and reflective moments of insight and new perspectives. There is joy in the love of friends and family and the daily gifts God gives. There is a yearning for Christ to return and bring healing to his entire groaning world. Overall, we are feeling well in spirit, trusting the God who calls into existence the things that are not and raises the dead. There is no reason to fear, because the light has dawned on all of us who sit in darkness, in the shadow of death.

Prayer points
For those who pray, here are some suggestions.
Give thanks:

• For so many positive reasons to rejoice: life and new life in Jesus; overwhelming support and offers of help; providential proximity to hospital (just a few hundred steps down the road); reasons to live found in all those around whom I can serve and from whom I receive so much; hope despite brokenness because Christ is the author of life and through his death destroyed the power of death and rescued us all from slavery to the fear of death.
• For a deeply encouraging celebration of 'God with us' over Christmas: God thinks this life is worth sharing - and fixing.
• For a health system that provides hours of medical expertise and attention, a wide variety of drugs and equipment for basically no charge.
• For easier breathing and sleeping since soon after treatment began.

Pray:

• That the combined chemotherapy and radiotherapy are effective in reducing the size of the growth (down to nothing!).
• That side-effects will be minimal and for patience to endure what is necessary, growing in perseverence, character and hope.
• That Jessica and I would stay thankful, loving and hopeful, trusting God to give strength each day. "The steadfast love of the LORD never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness." (Lam 3.21-22)

There is more to come.