Chemofog

Today a year ago I started chemotherapy. Although I've written a little more about the long term effects of radiotherapy, I've been realising that I don't think I have entirely recovered from chemo yet either.

In particular, I recently read a little about 'chemobrain' also known as 'chemofog', or more technically, post-chemotherapy cognitive impairment. In particular, as I read this article, I found it described my experience in ways that were surprisingly familiar.

It's not that I can't function, but complex things just seem more difficult, I get tired and confused more easily and have occasional memory lapses. It was much worse during chemo at the start of the year. I had frequent short-term memory lapses, had great difficulty concentrating on a task (and could not multitask) and found my empathy was considerably dampened. I could figure out what someone might be thinking/feeling if I put my mind to it, but it didn't come naturally and intuitively. Instead, my grasp of the emotional experience of others remained a kind of head knowledge without feeling much myself. This wasn't particularly helpful when it was a very emotional time for others! These effects all remain in a muted way (especially getting tired easily).

The research into this phenomenon is all quite recent (the few papers I could find were published in '06 or '07), but one study study that (at least some forms of) chemotherapy had medium-term effects on the physical size of the brain, causing a measurable reduction in size for a few years.

Complicating matters, the whole experience of getting so dramatically sick and then feeling physically (and mentally) weak for months has dented my confidence. Sometimes it is difficult to tell whether I am experiencing loss of competence or simply confidence.

This is another area in which I am learning to trust God, and thank him for the abilities and opportunities with which he has blessed me. I am learning to be human, finite, a creature.

This is the day that the LORD has made. Let us rejoice and be glad in it. - Psalm 118.24

A weighty issue

When my oncologist first told me I would be having radiotherapy of my oesophagus, one of the pieces of advice he gave me was to eat as much as possible in the weeks beforehand. My dietician said I ought to maximise my intake of protein, carbohydrates and fat (when was the last time your doctor told you to do that?). They were concerned that the damage to my oesophagus would make it difficult for me to eat and so I might lose a lot of weight. Since it was December when I was diagnosed, it was not difficult to follow their advice (especially with two very concerned families who liked to express their love by supplying us with lots of food, not the mention the many friends and members of our church family who also cooked us meals). As a result, I gained 5-10 kilos on top of my usual weight, putting me into the 'overweight' range, according to my BMI (Body Mass Index).

Radiotherapy did leave me on a liquids-only diet for a few weeks (and a water-only diet for a couple of days at one point. Even milk or very thin soup was too painful), but being tired and feeling unwell also greatly reduced my physical activity, so I never lost much of the weight I'd so rapidly gained.

Today, I remain a little above the 'normal' BMI, yet my oncologist has always been far more worried that I will start losing weight rapidly than he is concerned at my being slightly overweight. An article in today's Sydney Morning Herald might help explain his reaction: a US study has found that "being up to nearly 14 kilograms overweight reduces by 40 per cent your chance of dying from a range of common diseases and risks, not least because it improves your chances of recovering from surgery, injury and infections."

Yum.

One year on

On this day last year (at about this time), I was diagnosed with cancer. I thank God for many things: that I'm still alive (it really wasn't looking good for the first few weeks); for the love and support (and generosity) of so many people over the last year, particularly my wife Jessica; for a wonderful (basically) free public medical system in Australia; for the chance to reflect with a little more depth and urgency upon death, fear and hope (amongst other things); and for "new birth into a living hope" (1 Peter 1.3), which gives us so much to live for now.

Voice update
Yesterday, I saw my speech pathologist for the first time in a few months. She was very pleased with my progress and said at the end of my appointment that I am the miracle case that she tells stories about. After our first few meetings, she had expected I would need surgery to give me back anything like an acceptable level of function, but my vocal strength, endurance and range have all slowly grown each month as I've (usually) practised the exercises she has suggested. I can now hold a conversation without needing to explain that I don't have a cold. I can now sing again, at least a little and within a certain narrow range. Best of all, I can once more pray and praise God amidst his congregation, raising my voice to join in worship, which is, after all, what voices were made for.

The next step will be another nasal endoscopy in late January to determine whether any function has returned to my paralysed left vocal chord. This is unlikely, but my speech pathologist is curious, given my continued and unexpected improvement. If there is any movement, I will continue to see her to strengthen it. If not, I will simply sing as best as I am able in praise of the God who raises the dead.

[With] this poor lisping stammering tongue... I'll sing thy power to save.

- William Cowper (amended)

A reminder and brief update

Just a reminder to those who check this page that I post far more regularly (nearly every day) over at my main blog: nothing new under the sun.

No major health updates at the moment. I continue to regain strength slowly. I've taken up tennis and am trying to do more walking. I won't see the speech therapist again until December (though she was very happy with how my voice my going last time she saw me). Emotionally, I'm also still recovering, trying to rediscover the dreams and passions I had before getting sick took over too much of my world.

Thymus: why do I get sick more often?

Had my regular post-scan oncology appointment today and the professor was happy with the lack of change in my most recent scan. He did his usual poking and prodding and this time I was careful to not overreact and score an extra PET scan.

After steadily improving since April or May, my energy levels seem to have reached a plateau over the last couple of months. I have been sick with colds and the flu a number of times, and they have hung around longer than usual. This has reduced the regularity of my exercise. Of course, by 'exercise', I mean nothing more strenuous than a 30 minute walk! In any case, I found out today that there may be three reasons for the frequency and duration of these illnesses: (a) already being somewhat run down/still recovering in my overall level of health; (b) radiotherapy scarring probably means that my trachea is less effective at thwarting airborne pathogens; and (c) my thymus was also in the field of radiation. The thymus is a gland in the centre of your chest that plays an important role in your immune system. I didn't ask him directly, but it sounds like the latter two effects may be long term.

Although it is months since my first good scan, I have been acknowledging again to myself in recent weeks that I am very much still in recovery mode, physically and emotionally.

Still all clear

After the delays mentioned in the previous post, when it actually happened the scan today was quick and uncomplicated. Apart from some more scarring on my left lung from radiotherapy, there was no significant change from my last CT scan. This is excellent news and a weight off my mind. Praise God!

Third follow-up scan

I was due to have my third follow-up CT scan a couple of weeks ago. My oncologist has been away and the imaging place where I've had all four CT scans had been engaged anytime I rang and wasn't returning emails. It's good to go back to the same place so that all the scans are done on one machine, so I persevered in calling them. Eventually, I made a trip in to the city to see what the story was, only to find the site closed up, the interior stripped bare and no signs or indication if this was a move, renovation or permanent closure.

So yesterday I organised to have my next scan closer to home, indeed just down the road at a medical centre associated with RPAH. And I managed to get an appointment for later today. So as of one minute ago, I've started fasting for the required four hours before my next scan.

Although I've had no physical reasons to think this one might be any different, the extra weeks of delay have added to my feelings of anxiety. I trust that God will be with me whether I am sick or well, but it's also natural to get a few butterflies. I'm glad that it will soon be over.

Crash II

Here are some pics of how our car ended up after our recent crash. The insurance payout has covered it well. Still sad to say goodbye, even if it was going to die of old age fairly soon.

Crash

Last night Jessica and I had another life-experience and another chance to enjoy the hospitality of RPA.

While driving home from church around 9.30 pm, we were coming down Booth St in Annandale towards the intersection with Wigram Rd at the bottom of the hill where Booth curves around to the right. A taxi was turning right out of Wigram and obviously didn't see us but proceeded to coast into our front left side. Thankfully, he hit our front wheel rather than the passenger door a metre or so further back. Jess and I were both able to get out straight away. After we had checked that the three of us were OK, he apologised.

The next vehicle to appear around the corner five seconds later was a police car containing two constables, who immediately took charge of the situation. Jessica was complaining of neck pain, so was taken to RPA in an ambulance and a neck brace while I stayed with the police and taxi driver to give a statement. The police investigation quickly decided that the taxi driver was at fault for failing to give way. His defence was that he was not at fault because he hadn't seen us. On the one hand, I'm sad that this will probably have implications for his job, but on the other, if this was more than an isolated error of judgement, it may be best for him to do something else.

RPA again
The police gave me a lift to RPA, where I found that Jess was waiting for an x-ray of her spine. By this time, my neck was also sore, so I joined the queue in emergency (it was a busy night). After I'd seen a doctor a few hours later (who had cleared me of anything more than muscle pain), I found that Jessica's x-rays had also cleared her. They kept her under observation until about 2 am when we could finally walk the few hundred metres home.

We slept in this morning (thankfully, Jess didn't have to work. She has accepted a new job a few days ago and is winding down in her old position) and woke up bruised and stiff, but better than we'd expected to feel.

RIP XOU219
Our faithful old '84 Corolla had to be towed away and is almost certainly written off. With only months of registration left, it had been unlikely to survive another year anyway. I tried to take some photos on my phone but there wasn't much light and they didn't work. The police took a number of shots, but I'm not sure whether I'll get to see them. Jess has to go down to the Glebe station tonight to give a statement (they decided not to interview her in emergency). This is the only image of the car I could find, from a holiday about a year ago.

We thank God for his protection. When one of the constables found that I work for a church, he asked whether 'the big fella' had let me down. I thought not. Things could have been much, much worse.
Map from Where Is. The crosshairs show where the accident occurred. We live down and to the right, on the corner of Parramatta and Missenden Rds. RPA (Royal Prince Alfred Hospital) is a few hundred metres down Missenden Rd, just off the bottom of the map.

PET scan clear

My PET scan at RPA today confirmed the CT scan from a week or so ago in showing no new cancerous activity.

Some people really don't like PET scans because you get strapped in place and can't move at all for about twenty minutes while you lie encased within a cylindrical machine that measures your radioactivity (after you've been injected with radioactive sugar). If you're claustrophobic, I imagine it could be quite distressing. I don't mind it (apart from getting an itchy nose) - an extra chance for a nap.

I discovered just a minute ago that contrary to what I said in my previous post, Prof Tattersal had not been planning on my having this PET scan until he noted a tenderness in a lymph node near my clavicle. I think I had just forgotten how uncomfortable a lymph node palpitation can be and flinched when he stuck his fingers into my neck. This also happened the first time he did it, but on subsequent times I was ready for it.

Yet another scan

I wasn't sure when I went to have my recent CT scan last Friday whether I would also need to have a PET scan (the second paragraph of this post explains what a PET scan is). I thought this would only be necessary if there was bad news, but having seen Professor Tattersal (my oncologist) on Tuesday, I found that he was planing a PET scan in any case. So I've just arranged to have it first thing Monday morning. I presume I will continue to have both scans every few months for the next couple of years.

Speaking of Professor Tattersal, I've really appreciated my times with him. He is always understated, has a sharp wit and a strong desire to make it into the Guiness Book of Records. He is also very geneous with his time and has made himself very easy to contact when needed.

At my Tuesday appointment, I asked how to minimise the chances of a relapse and he made three suggestions: (a) don't lose lots of weight, (b) exercise well (Jessica and I started a new exercise program a couple of weeks ago and are - amazingly - being quite consistent with it. We're starting slowly since I've lost a lot of stamina and strength) and (c) think positively.

As I was leaving, he also asked me to have a blood test "because you're here". It was disconcerting to go back into the chemo suite, even for a few minutes. There is so much pain and anxiety in that space. Even just sitting in a chair, I began to feel a little queasy in memory of past experiences. The nurses are very caring and competent, though the one taking my blood had trouble finding a vein (which didn't help my queasiness). Unfortunately, yesterday I received a call to ask me to come back in, since my blood had been misplaced. I'm just heading off there now. Another day, another needle.

Good scan!

My CT scan yesterday was fairly painless (no fiddling round to find a vein only to give up after too many attempts like last time) and even better, there was 'no suggestion of tumour recurrence seen'! In fact, the remaining mass has continued to shrink (they didn't give any measurements). So that was all good news. Thanks to those whom I know were praying (and to those who might have been doing so secretly) - and once again, an even bigger thanks to God!

Scan and voice

Tomorrow I will have my next CT scan to see whether anything has happened since the last one. If it is different, I assume I get the privilege of another PET scan. I'm not sure whether I will get the results tomorrow or Monday. Please pray that Jessica and I will continue to trust God as we await the outcome - and that it's a good one!

I also saw the speech therapist again yesterday and learned a few more things. First, I found that my left vocal cord is paralysed in a paramedial position (partially 'on', rather than fully 'off' as I had thought) and this is why my voice has returned to the level that it has (i.e. more than nothing, less than it was). Second, she very kindly invited me to a workshop she is organising for speech therapists to watch a world-famous voice teacher work with some of her patiences (one of whom will be me!). So I get a free consultation with a lady who normally charges over $200. The only price is that I'll have twenty therapists watching me as I do so. And third, I found that if I do end up having surgery on my larynx, this would involve the insertion of a bioplastic wedge to jam my left chord more fully on (rather than a collagen injection as I had previously thought). Compared to the injection, this sounds like a more uncomfortable procedure (a local anathestic while they cut your neck open; they need you awake so you can be testing your voice as they do it!); however, the injection needs to be repeated every few months, while this procedure would be permanent. Either option might only have a marginal effect on my voice (or none at all), though if I'm going to use my voice for a living, this could be worth it.

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!

Next scan soon

It's been over two months since I received the all-clear from a PET scan and so about time to be scanned again. I've been trying to contact my oncologist this last week, but he must be on holidays. He's usually very good at returning calls quickly. It's been over two months since my last cannula, but my wrists are still tender...

UPDATE: Just found out he is away and will be back in early July.

Before and after

A tale of two scans
I've just realised that I never posted these amazing images. The first is part of my CT scan from 1st December last year and is two vertical slices of my body. The black path down the middle of each picture is my windpipe. Towards the bottom it divides into two (one bronchial tube to each lung). You can clearly see the growth (which measurements of its height and width) almost entirely blocking my left bronchial tube (though this is on the right of the image, since you are looking at my chest front on). This is why I was having difficulty breathing! In fact, I only really started having noticable trouble with my breathing a week or two later than this scan, when the growth must have been bigger. By the end of December, just before treatment started, this left tube was completely blocked at times (esp when I lay down).
Breathing easy
The second pair of images are from my most recent CT scan. This is the same region as the first scan. Notice the smooth sides of the windpipe and bronchial tubes. There is still a residual mass visible, but it is much smaller.
Cured?
This is wonderful - however, it doesn't mean a definitive 'cure', as I have mentioned before. I will continue to have regular scans every few months (another one is coming up in a few weeks). It is not until two years without any regrowth that they are happy to say that this growth has been beaten.

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.

In the news

My story (with quotes and pics from this blog and my other one) has made it onto the sydneyanglicans.net website: here.

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: 16th April

The breath of God has made me,
     and the breath of the Almighty gives me life.

- Job 33.4

Good news!
It has been a month since I had a CT scan that revealed the growth in my chest had shrunk to about a quarter of the size it had been in early December.

This morning, I had a PET scan at RPA Hospital. This involved being injected with radioactive glucose* and then being scanned to see where I was radioactive. The glucose is taken up into cells with high activity: the brain, liver, active muscles - and active tumours. The pattern of radiation thus reveals whether any tumours are active.
*Technically, radioactive tracer in a glucose solution, since the sugar itself doesn't undergo radioactive decay.

But my scan was clear. There was 'no evidence of viable tumour activity' . This means that the remaining tissue revealed last month on the CT scan is simply dead scar tissue. Praise God! This is what we've been praying for and the best outcome we could have hoped for after the diagnosis in December.

From here, I will continue to have tests every few months to check for relapse. If I remain clear for two years, the likelihood of it returning becomes much smaller. But for the moment, I have been spared. And for this, we are thankful.

I know there are many others who do not have such good news today, but who continue to struggle with illness and a variety of difficulties. Why have I been spared at this time? It is not a reward, but pure gift, like all life. We remain thankful for every day.

What has changed? In one sense, not much. I will still die sooner or later and I continue to trust the God who raises the dead. I still follow one whose path of faithful obedience meant suffering amidst a groaning and broken world. Health remains a good gift from God's Spirit, but not the goal of life. There are worse things than sickness and death.

Yet, of course, today's small mercy is worth celebrating: more life together with you; more opportunities to serve God, his world and his people; more time to tell of God's goodness to us all. I am looking forward to celebrating with friends and family, not having any more needles (at least until the next scan), and starting to once more think about the future beyond next week.

My health continues to improve after treatment ended two months ago. I have more energy and am able to eat most things. I am beginning to work at improving my vocal volume with the help of speech therapy. I have lost all my convenient excuses for avoiding the exercise regime that Jessica and I have been promising each other for years.

Thank you for all your prayers, love, cards, food, gifts, kindness and presence (even in spirit). We have really appreciated your company on this leg of our journey and look forward to more adventures together (hopefully for many years!).

At this milestone, we think it's appropriate to give thanks and celebrate God's kindness to us. And so, Jessica and I would like to invite you (and any interested others you know), who have supported and prayed for us, to a thanksgiving service. We haven't yet worked out any details, but we'd love to acknowledge that we are and remain recipients of undeserved grace from you and our heavenly Father. We'll let you know date and time soon.

Of course, we'd still love your prayers:
Give thanks: for so many things - I'm sure you can think of some!
Pray: for those who face disappointment and not joy today; for patience and discipline in trying to strengthen my voice; and that we will not forget the lessons we have learned.

Update: 13th April

PET scan next week
Just got a call to say that my PET scan will be on Monday morning 9 am. I fast for five hours beforehand (so that I'm ready to go really slow for a few hours...). This scan is to determine whether the residual mass revealed in my most recent CT scan is still active or is merely scar tissue. I get an injection of radioactive glucose (sugar) and sit very still for an hour. Sugar is picked up by cells that have been active (which is why I sit very still - so that as little as possible goes into other muscles), particularly the brain and active tumour cells. I then lie inside a large tube that functions as a 3D Geiger counter, measuring where radiation is coming from (i.e. which cells have been picking up the glucose). I probably won't get the results for at least a couple of days. I'll post an update here as soon as I know.

Speech therapy
In other news, yesterday I went to my first session of speech therapy proper and have been given a variety of amusing sounds to practice. I would have been really good at being a speech therapist before I lost my voice - I used to love practising silly noises.

Update: 29th March

Nasal endoscopy
I've just returned home from having a second nasal endoscopy. Not the most pleasant experience (although there are worse places to stick an endoscope, I assume), but second time round the results were not quite so surprising. It was a similar procedure back towards the end of November that first discovered my paralysed left vocal cord and which led to my first CT scan that found the tumour.

Options
This time, the result was the same: a palsy (paralysis) of the left vocal cord, most likely from nerve damage to the nerve that controls it. I have two options: speech therapy to help my right vocal cord compensate (more than it already is, since the gradual improvement of my voice since October is the result of this tendency); or a surgical procedure to insert a piece of plastic into my larynx in order to turn my left vocal cord permanently 'on'. Non-invasive procedures are nearly always better to try first, so I will give speech therapy a few months and see if there is any improvement before I let them take a knife to my throat.

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 March

It has now been about a month since I finished treatment. This Wednesday I have my first post-treatment scan. It will be a CT scan to determine the size of the remaining growth (if any). In another month I will have a second scan (a PET scan) which will give the other half of the picture: whether what is left is still active. Thus, while there may be something left, this could just be scar tissue and it will be another month before it is possible to tell. However, Wednesday's scan will also (hopefully) rule out the worst case scenario of there being secondary growths indicating that the cancer has spread. More on Wednesday (or possibly Thursday), when I will send out another group email (and post it here too).

Update: 14th March

Although for the last month or so I have been eating only liquids, over the last three or four days I have started also having some soft solids, which is very exciting, since it means my oesophagus is healing from the radiotherapy burns. Grace before meals is said with particular emphasis these days.

Update: 1st March

Turned the corner?
After getting gradually worse for each of the last eight weeks, it feels like things might have finally turned a corner, since I feel a little better than I did at this stage last week (when I was just coming home from hospital). I am still only consuming liquids, but they are going down a little easier and faster than they were. Similarity, the burn mark on my back is healing well and is no longer itchy or sore. Feels nice to be on this side of the hill.

Here is a picture of my typical breakfast at the moment.

Update: 22nd Feb

Needle-free Wednesday failure
Yesterday should have been my first needle-free Wednesday since I finished chemotherapy last week. However, as the day progressed, I grew more stiff and tired and developed a headache. During the afternoon, my temperature started to rise.

Nevertheless, we decided to go to the second meeting of our new Bible study group for 20-30 somethings at All Souls, which turned out to be an excellent decision. After having 7 people last week, this time we had 15! We're now thinking of starting a second group on Tuesday nights. This is very exciting and an answer to prayer as we seek to build a sub-community within the church in this previously under-represented demographic. We started a series on the passion narrative in Luke (very appropriate for Lent), in parallel with the sermons until Easter. The triumphal entry is such an interesting passage (Luke 19.28-40) - perhaps I'll post on it sometime soon on my main blog.

However, when we got home from the group, my temperature had breached the limits of the normal adult range. This, for a chemo patient, is potentially quite serious since the treatment reduces the body's ability to fight infections. An illness that might send a healthy person to bed for a day can be life-threatening if your white cell count is too low.

So we went to Emergency at RPAH and discovered that combining 'chemotherapy' and 'temperature' turns out to be one of those secret passwords that gets you lots of attention very quickly from the triage nurse. One of the 'benefits' of my condition is that I seem to jump lots of queues and have had less experience being forced to be patient than most patients.

As it turned out, my blood count was unexpectedly good so close to chemo treatment. Since they couldn't find the source of the fever, they decided to keep me under observation and hydrated (i.e. with a drip, requiring yet another needle and cannula, hence the failure of needle-free Wednesday). By morning, my fever had broken and by six this evening I was discharged. This is the first time I've needed to be admitted to hospital, which is a great blessing. I admire those who work there, as they can be very depressing places.

For now, the main task health-wise is continuing to rest and remain hydrated. The main task life-wise is still loving God and neighbour.

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: 14th Feb

Final Chemo
After waiting for three hours for blood results that usually take 30 minutes, we ended up back in the pack today rather than being one of the first. This made for a long day: 8 am start and just got home at 5.30 pm. But it's over - at least the chemo part (3 more days of radiotherapy). I've really enjoyed getting to know some of the nurses and their quirky sense of humour. Don't think I've overcome my needle squeamishness, even after so many (I lost count weeks ago).

Our oncologist was again positive today. Once all treatment is over, we'll wait a month and then I have a neck-to-toe CT scan. He said he would be surprised and disappointed if the news is bad, but since he's still unsure of the cause and nature of the growth, there are certainly no guarantees. After the CT scan, we wait another month and I have a PET scan to confirm there is no unusual growth activity (God willing). If that is also clear, then I'll keep having checks every 3-6 months for a few years before the all clear is given. If the growth is still active in a month or two, then the question of surgery will again be asked (which depends on how much it might have shrunk and in which directions. When I first presented, surgery was ruled out because the growth was inside my left bronchial tube and too close to my oesophagus and aorta). If the news is very bad (new growths), then that is a whole new ball game, probably involving a shift from curative to palliative treatment, but he said he'd be very surprised were that to be the case. We continue to trust God for the outcome, whatever it may be, though are very thankful for the positive indications we've been receiving so far.

As for side-effects, the radiotherapy has certainly overtaken the chemotherapy. The main issues now are still tiredness, but also swallowing and reflux. In particular, I am basically now on a fluid diet: soup and tasty dietary supplement drinks. Occasionally, I put in the effort to have something very soft, but it is quite painful, even using an oral anaesthetic (Xylocaine) that I gargle before some meals. The reflux is more a constant dull feeling of burning as the lower end of my oesophagus, weakened by the radiotherapy, fails to keep back the acids from my stomach. I take antiacids to reduce the effect, but it's particularly annoying at night and I still sleep propped up in bed (and with our bed propped up on some bricks) to get what help I can from gravity.

My second sermon on Sunday (on the two natures of Christ in the Apostles' Creed) was enjoyable to write, though due to tiredness, I ran out of time to cut it back as much as I would have liked. It can be downloaded here (or it will there soon, depends on the volunteer who manages the website). Here is a taste. Last night, we also started a new Bible study for 20s/30s and got off to a solid start.

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.

Update: 6th Feb

Tiredness
The main development in the last week or so is that I've been feeling more and more tired. This is partially the chemotherapy taking a lot of energy as my body destroys and replaces cells quickly, partially the cumulative effects of the radiotherapy as the weeks progress, and partially the effect of coming off steroids after being on them for the last six weeks or so. Also contributing has been a reduction in the quality (and quantity) of my sleep again; this time due to some back pain from lack of exercise and proper stretching. This is something I have experienced on and off over the last few years and is the result of poor posture and a largely sedentary lifestyle. No one to blame but myself! Though at the moment, I rarely feel like exercising or stretching.

Tiredness has been a significant part of why I still haven't finished the FAQ. Apologies, and I do still intend to get there before my treatment is over...

Keep praying that I would have energy when I need it and would be able to get good rest at other times.

Update: 31st Jan

Just a brief post to say that chemotherapy today was not affected by my food poisoning episode yesterday. I still received both the usual drugs (I will soon continue to extend the FAQs to discuss my treatment), and again had no reaction, thanks to the 20 mg of Dexmethsone that will probably keep me up tonight! Finding good veins for the canula is getting more difficult as some of the ones they have been using in the past are hardened from the treatment.

Also, my oncologist spoke very positively today and how well things seem to be going in his opinion. We discovered that I will probably receive only two more rounds of chemotherapy (and so chemo and radio will end around the same time). At that time, we'll wait four or six weeks for the radiotherapy to have its maximum effect and then repeat CT and PET scans to see where things are up to. We're praying that the growth will have either disappeared or no longer be active.

Today we discovered that a very friendly Christian lady we met a few weeks ago and talked to again today while waiting for chemotherapy is someone we've been praying for every week at All Souls, the sister of another All Souls member also undergoing chemo. It was encouraging to hear her story (and that of her niece, who accompanies her) and see her joy in God (she has only come to follow Jesus fairly recently, having been introduced to him via her niece).

Update: 30th Jan

The cost of cheap Thai
Today I had a bad afternoon. After eating cheap Thai on King St for lunch, I had food poisoning and needed to go into RPAH (my local hospital: Royal Prince Alfred Hospital) for a few hours to get checked out and have some fluids replaced. I've been told that during chemo, if I start to feel sick, I ought to go in and get checked out, because if my immune system is too low to fight an infection, then what might usually put someone in bed for a few hours could become much more serious. As it was, the food poisoning came and went quite quickly and I was in no serious danger, but it wasn't a pleasant afternoon. At least I had a good morning.

Tomorrow, I will go in again and have chemo #5 if my white blood count continues to be high enough. Today was day #20 (of 33) of radiotherapy.

In other news, our second week at our new church, All Souls Anglican, Leichhardt went quite well. I preached at both services on 'Global Scarcity', the fifth and final sermon in a summer series on globalisation. Sometime soon, it should be available for download from the All Souls site. We continue to feel very welcomed as we get to know more of the community.

Update: 24th Jan

      The Psalms end with this invitation:

Let everything that has breath praise the LORD.

- Psalm 150.6

      I have plenty of reasons to praise God at the moment, since I am now halfway into my treatment cycle and my breathing is basically back to normal. Although it will be a number of weeks before we have any more scans, at this stage, it seems that the tumour is shrinking (at least my bronchial tube no longer feels obstructed). Things have changed a lot since Christmas, when I would wake every few hours to find my left lung wasn't getting any air! I have exchanged some of the direct effects of the tumour (breathing and coughing) for side-effects of the treatment (mainly tiredness and weakness, but also some difficulty swallowing, which will grow as radiotherapy continues).
      Today I had my fifth (weekly) chemotherapy and seventeenth (daily on weekdays) radiotherapy sessions. They have all been going smoothly, apart from a sudden reaction two weeks ago during the administration of one of the chemotherapy drugs. Although not uncommon, the speed and intensity were quite scary as within sixty seconds I flushed, became very short of breath and had intense back pain for a couple of minutes until I was given drugs to counter it. Since then, I've been given an extra-strong dose of steroids before each chemotherapy, which has prevented another reaction but disrupted sleep on Wednesday nights (and given me a big appetite - I am still putting on weight, having been told by my dietician to enjoy a high protein, high calorie diet (!)). Generally, however, my sleep has been better and our daily life has been fairly 'normal' during January, albeit a little slower than usual with both of us feeling tired much of the time. I have also sometimes been having difficulty concentrating and find my increased absent-mindedness frustrating.
      Jessica and I have both started work for the year. Jess is working 3 days/wk in St Leonards as a social researcher. On Sunday I also began 3 days/wk (or some fraction of it, depending on energy levels) at All Souls Anglican Church, Leichhardt as a lay ministry assistant. I had energy on Sunday and enjoyed meeting new people. We're looking forward to getting to know and be part of this community at greater depth, as well as trying to reach out to the local area, particularly to those in the 20-30 somethings. If you're looking for a church around Leichhardt, feel free to drop in on a Sunday (10.00 am or 6.30 pm, cnr Norton and Marion Sts).
      We've been thinking recently about how it's important for the cancer to not become the centre of our lives and routine. Life is a gift and staying healthy is a good aim, but is not the most important thing. More important is continuing to grow in our love for God and those around us.

      For those who pray, we continue to appreciate and thank God regularly for your support. Here are some suggestions.
      Give thanks:
            • For continued improvements to breathing and the reduction in the growth.
            • For new opportunities to work and serve, especially for the community at All Souls, Leichhardt and what God is doing amongst them, which we'd love to join in on.
            • For unexpected acts of generosity and support from a wide range of people.

      Pray:
            • That the treatment would continue to reduce and remove the tumour with minimal and manageable side-effects and no further reactions.
            • That as we enter new contexts we would both have energy to keep caring for one another and strength to build new relationships of trust and grace.
            • That our focus would remain on the primary things (loving God and neighbour), with secondary tasks taking their appropriate place.

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.

Prognosis

Is it terminal? How long do they expect you to live?
Again, no idea. Because of the rarity of this kind of growth in a person my age, there are very few statistics to give a guide as to average life expectancy or likely progression of the cancer and its responsiveness to treatment. Even if there were a larger body of statistics, all they can tell you are averages and likelihoods based on those somewhat similar to you. Every cancer is different and so is every individual response. Many doctors do not think that speaking in terms of so many years or months to live is particularly helpful in any case as it can become a self-fulfilling prophecy. Indeed, having a hopeful outlook can improve your chances. I am hopeful not because I think Christians are impervious to sickness, but because I hope in the God who raises the dead. Each day, each breath is a gift from the one who made everything and is able to sustain me as long as he desires.

Why do we need a doctor's permission to live or die? I will depart when my Lord calls me, not before. I pray and hope that is later, rather than sooner. I have no desire to die, no secret deathwish. Death is a bad thing, though it is not the worst of all possible things and in Christ, I need have no fear - not because he promises to keep me alive, but because he will accept what I entrust to him and raise me up into his new world one day.

Having said all that, initial indications seem to be that treatment is being effective. My breathing has improved significantly after just the first few weeks of chemotherapy. My oncologist's response when I asked if the chemo could be working so soon: "Chemo or prayer - I don't really care, as long as it works!". He seems quite upbeat about my chances and speaks in terms of "going for broke" and "curative doses" of radiotherapy. I take them as good signs for the moment - and keep praying!
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.
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Blog Title

What does it mean?
My title is borrowed from a phrase by the Apostle Paul in 2 Corinthians 4.8. Here it is in context:

   For we do not proclaim ourselves; we proclaim Jesus Christ as Lord and ourselves as your slaves for Jesus’ sake. For it is the God who said, “Let light shine out of darkness,” who has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ. But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us.
   We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh. So death is at work in us, but life in you. But just as we have the same spirit of faith that is in accordance with scripture--“I believed, and so I spoke”--we also believe, and so we speak, because we know that the one who raised the Lord Jesus will raise us also with Jesus, and will bring us with you into his presence. Yes, everything is for your sake, so that grace, as it extends to more and more people, may increase thanksgiving, to the glory of God. So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal.

- 2 Corinthians 4.5-18 (NRSV)

Paul is speaking of his own ambiguous experience in life. He lives the reality of following a crucified and resurrected Lord and his experience embraces both realities: suffering in this present age in the midst of a groaning world, yet filled with the same Spirit who raised Christ from the dead. And this is the experience of all Christians: neither a triumphalistic walk in the park through wealth and health, but nor a bleak and hopeless spiral into pain and despair. Nor simply a mix of light and dark. But a rich yearning in a cracked world, where experiences of failure and suffering become occasions for the revelation of God's mysterious resurrection power: his power is "made perfect in our weakness", Paul claims later in this same letter, because it is at these points that the nexus between human effort and success is broken, and it becomes apparent that our frail existence owes everything to God. We have the treasure of life and new life in Christ hidden in the clay jar (the ancient equivalent of a throw-away styrofoam cup) of a bodily life constantly thwarted by illness, sin and ultimately death. The goal is not a Platonic escape from the body into a 'spiritual' extra-bodily existence, but is nothing less than our own future resurrection from the dead in a renewed universe.

But while we wait, my experience of the Christian life is often well summed up by a phrase that has been something of a personal motto since it struck me powerfully back in 1998: perplexed, but not in despair.

And to wax a little indulgent, here is a piece of angst poetry from my 20-year old self when I adopted the motto.

perplexity without despair

Wandering slowly up the garden path,
      trapped between conceit and metaphor:
      an adult playing at adult games.
Uncertainty, aimlessness, ignorance.

Wondering slowly between vague mistakes,
      undefined ideas far from ideal,
      far too bored to misspend a minute.
Introspection, paradox, transience.

Pondering when, what and whether to think,
      looking at a world of perceptions,
      but not out for other perceivers.
Fragmentation, finitude, selfishness.

Pandering to wind, wave, whether and whim;
      often vanquished at the death struggle,
      yet stalwart with this treasure within.
Vacillation, tragedy, assurance.

(31/10/98)
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