Sunday, December 27, 2015

Considering the alternatives

I’m pretty sceptical when it comes to unconventional medical treatments. I take the approach best expressed by Tim Minchin – “Do you know what they call alternative medicine that’s been proved to work? Medicine.”

When it comes to cancer, alternative medicine abounds. A range of concoctions purport to offer an easy pathway to greater longevity and better health. Charlatan Belle Gibson made outrageous claims about beating cancer merely through “nutrition, patience, determination and love – as well as vitamin and Ayurvedic treatments, craniosacral therapy, and a whole lot of other treatments”. The US-based Cancer Tutor website claims that purple grape juice and carrot-and-beet juice are both “excellent cancer treatments with very high cure rates”. Advocates of Gerson Therapy say that cancer can be cured with 13 glasses of juice a day, a range of supplements and coffee enemas. Really.

Cancer patients are particularly vulnerable to the lure of such quackery. I think part of the reason lies in the fact the conventional medical treatment is so toxic and arduous. To learn that the path to better health mapped out by conventional medicine involves rounds of chemotherapy and radiotherapy, with cells both innocuous and malicious coming under attack as the body becomes a battleground, is confronting. It is daunting to know that debilitating side-effects lie ahead. Another route to the same destination that avoids the side-effects is understandably tempting.

The existential threat posed by cancer adds to the allure of alternatives. After all, if your life it at stake, it seems foolish to not explore all the options. Many people diagnosed with cancer will ultimately die from the disease even with the best in conventional medicine, leading to the false and naïve assumption that they might have been saved had they embraced the alternatives.

Much of the support among patients for alternative medicines comes from people who have an ingrained cynicism towards the medical establishment and who view following its edicts as acts of conformity. For them, embracing alternative medicine is a statement of identity; they choose their cancer treatment in the same way they might buy their groceries. With chemotherapy drugs expensive and major pharmaceutical companies driving development, opting for an unscientific alternative to chemo becomes a political statement of rebellion.

The formula most medical experts adopt is that patients can try alternative treatments if they want, but they should continue with conventional medicine and tell their treating doctor to make sure the alternative treatment doesn’t interfere. If the alternative is doing no harm, then why discourage a patient from trying? That approach makes a lot of sense.

For all their failings, alternative treatments can have some benefit, though not in the way their advocates say. If you’re like me and you are doubtful of the power of alternative treatments, they will do no good. But if you’re someone who believes strongly in the power of those treatments, they might provide some marginal benefit thanks to the placebo effect. The sense of hope that treatment might give the patient could, in and of itself, benefit the patient if it lifts their mood, gives them comfort or in some other way improves their disposition.

There’s plenty of conjecture about the extent to which psychological factors can impact on the progress of physical ailments. While scientifically testing the impact is notoriously difficult, lived experience suggests there is some physical benefit at the margins from a more positive psychological outlook.

(This also reflects my thinking on the power of prayer. Since I was diagnosed, some people have told me they are praying for me. I don’t believe in a higher power, and so I do not think those prayers per se will have any impact on my health. But it is comforting to hear from various people that I am in their thoughts, and the kindness of these people lifts my mood. But my mood is also lifted from other people that get in touch to send good wishes rather than prayers. That improvement in mood has some incremental positive impact on my health, but of course it is not the “praying” that brings the benefit but the “telling me”. As for patients themselves praying, there’s no benefit for a non-believer like me, but there may well be for a person of faith.)

The greatest problem is among patients who discard conventional medicine altogether and rely exclusively on alternative medicine for treatment. Too many people in that position have lost their lives relying on alternative medicine while cancer, or other diseases, ravaged their bodies. While you can never say for sure that conventional medicine could have helped, it seems likely in many cases.

Tasty, but not a cure for cancer. (Image courtesy of Pixabay)
Why do people turn away from conventional medicine? Cancer Australia notes on its website: “One large study has found there is a significant association between the use of complementary and alternative therapies by cancer patients and needs unmet by conventional medicine, helplessness and lower scores on emotional and social functioning scales.” The Skeptic’s Dictionary also has an excellent list of 11 reasons why alternative health care is so popular. So there are things that doctors can do to encourage patients to embrace conventional rather than alternative medicine.

For starters, give patients the information they need in a format they can understand. The early period after diagnosis is one in which the patient is given great volumes of information, but much of it is technical and laden in jargon. The material can be intimidating for a patient and prompt them to fear that they will receive a treatment that may do them harm. In my case, an excellent hour-long session with a cancer nurse early on gave me a no-nonsense guide to what was coming up and a chance to ask questions. For some later clinical decisions, though, I was left in the dark or given information that was difficult to understand. Informed consent is impossible in these conditions, and a patient is more likely to consider alternatives.

Which gets to the matter of choice. Many people with cancer have a feeling of helplessness because of the disease harming their body. But I suspect many also feel helpless that they have little agency over the treatment they receive. The path of chemotherapy and radiotherapy can be presented as the only option rather than the best option, leaving the patient feeling they have no choice but to proceed. While this may lead to early patient compliance, it may also lead to later rebellion and a search for alternatives. Better for the patient to choose to go down the path rather than feel forced onto it.

Doctors might also benefit from being frank with their patients about their outlook in the absence of treatment, which is essentially what relying exclusively on alternative treatments amounts to. To hear the prospects of death or a low quality of life in the absence of treatment makes conventional treatment, even with its side-effects, more palatable. Remaining naïve to the consequences of inaction can leave a person more willing to let their desire for a treatment that reflects their identity overwhelm their survival instinct.

Ultimately, of course, patients should be free to choose the path they think is right for them, including alternative medicine if they wish. But they should be able to do so in full possession of the facts about the success rates and the side-effects. Unless advocates of alternative medicine are willing to subject their treatments to scientific rigour – which, following the Tim Minchin line, would allow successful treatments to enter conventional medicine – they should be treated with scepticism. 

Advocates who hide painful truths from those they are seeking to lure are doing themselves and patients no favours.

Wednesday, December 09, 2015

So I'm going to be a dad

“So guess what? I’m not the only one in this couple with a mysterious growth inside me!”

That’s how I considered telling my parents and parents-in-law that we were expecting a child at the same time I was battling cancer. But that’s not how it happened.

Instead I was lying in my hospital bed with my wife Melanie holding my hand. I was still groggy as I recovered from a biopsy and had a great big tube coming out my side to drain my chest. Days earlier a mysterious lump had been found in my upper chest, and while we waited to find out what it was we all feared the worst.

It happened to be my birthday and I was happily receiving gifts from the people gathered around the bed. It came time for Melanie to give me a present, and she handed me one that she’d very carefully selected – a book, “So You’re Going to Be a Dad”.

I enthusiastically unwrapped it and held it up for my parents and parents-in-law to see. As I began to utter the magical words waves of emotion lashed the shores of my mind. “It’s been a pretty eventful few days,” I said, my voice rising an octave. “Well, Melanie and I have some more news for you. We’re going to have…” My sobs overwhelmed the end of the sentence.

After some frantic pointing at the book and at Melanie’s belly the meaning of my curtailed revelation was clear. With infectiousness suitable for a hospital, we all quickly teared up and exchanged hugs. Even my father, not known for public displays of emotion at places other than the Southern Stand of the MCG, was soon in need of a box of tissues.

Melanie and I knew we were expecting a baby since before my health troubles emerged in mid-October but told few people until the first anniversary of our wedding on Monday. It’s a relief to finally share the information, meaning we no longer need to keep a big secret amid all the tumult.

So what does it mean to have a pregnancy and a cancer battle going on in the one household at the same time?

For starters, we’ve got to be careful. When you take chemo drugs, and for a week after, the patient is cytotoxic, meaning their secretions are poisonous (literally “toxic to cells”). Most other people have robust enough immune systems to cope with small amounts of cytotoxic exposure, and the only concern is significant spills of bodily fluid. But for a developing foetus, cytotoxicity can do damage to development, particularly during the first trimester. (I started chemotherapy when Mel was 11 weeks pregnant.)

After speaking to several doctors on the oncology and obstetrics sides, we decided to take a very cautious approach.

One recurring piece of advice was to use separate toilets – but our modest one-bedroom home has just one. To the rescue came Mel’s dad Keith, a fine father-in-law and an excellent home handyman. He quickly formulated a plan to construct a temporary dunny on our veranda. Within days he’d got the materials he needed at Bunnings and set to work. Before long we had a thunderbox to be proud of, fully flushing, walled in on all sides, and decorated with a tasteful landscape scene on the door. Our toilet problem had been solved.

Then there are all the other ways two people might incidentally pollute each other. The night sweats that had become common for me meant we opted for separate beds, with me sleeping in the living room. The shower was another potential hot spot, so Mel agreed to use other facilities available to her. We invested in a set of cutlery and crockery, with a distinctive design, so that we could each have our own utensils.

Six weeks after we started, it seems to be working pretty well. We’ve got into a happy rhythm at home and we know what we can and can’t do. For about one week in three, when the chemo drugs are flushed out of my system, things get back to normal, and for the rest of the time we just get on with it.

There’s not a lot of research about people in our circumstances. It is hard to know the exact risk posed to a foetus from exposure to cytotoxic chemicals, because it doesn’t happen very often. But the downside of being too cavalier seems far greater than the downside of being too cautious, so we are being careful. I would hate to be haunted by thoughts of “if only” if something unexpected were to happen. Still, some recent research showed that women who were diagnosed with breast cancer while they were pregnant could still receive chemotherapy beyond the first trimester without harming the foetus, giving us greater confidence.

My chemo and Mel’s pregnancy has had some similar effects on our bodies. Both of us are frequently and profoundly tired. Some days in the past few weeks when we get home it’s been a race to see who gets the couch and who gets the bed for a good lie down. The hard work each of our bodies is doing in response to the new arrival is sapping our energy and leaving little room for discretionary effort. We are also frequent visitors to the loo as our bladders struggle with the extra pressure – lucky we’ve got two (toilets that is, but it also applies to bladders).

Then there are the dietary changes. Both a foetus and a cancer patient during the neutropenic phase have a weak immune system and so are unable to fight off things that are innocuous for most others. So soft cheeses are out, as are unpeeled fruit, raw eggs, cold meats, some seafood and unwashed salads. Having the two of us both face the same restrictions on diet does make shopping and cooking a whole lot easier, although the things we do end up preparing are unlikely to land us a spot on MasterChef. (Though a MasterChef Preggers and Cancer special would be worth watching.)

Perhaps the toughest part is that neither of us are equipped to play the caring role we wish we could play. The advice for pregnant women is to seek support from their partners, and cancer patients get told a similar thing. Put the two of us together, though, and there’s a surfeit of care needed but a deficit available. Which is why we’re so lucky to draw on support from the aforementioned parents and parents-in-law, as well as dozens of others who have lent a hand.

If things go to plan I’ll finish my chemo treatment and enter remission in April, and Melanie will give birth in May. There’s a gap of just a couple of weeks, and if my treatment runs long or the baby comes early, we’ll have an awkward overlap. Tough if it happens, but we’ll cope. Also tough will be the few months beforehand, when the advanced state of Mel’s pregnancy might leave her exhausted, while the cumulative effect of my chemo will drain me of energy. All while we seek to prepare our house for the new arrival. Oh joy.

A few people have commented that the impending arrival of a child has given me extra incentive to beat the disease. Maybe. Even without a child on the way I had a strong will to live. There were too many interesting things out there to experience to allow me to shuffle into the sunset at 33 without feeling like I’d missed out. The prospect of becoming a parent – perhaps the most exhilarating things one can possibly experience – has given me something profound to look forward to.

But now I’m not just responsible for me. There’s a 17-week old foetus in Melanie’s belly that is depending partly on us to raise it, to feed it, to protect it and to tell it lame jokes. I have an obligation to be in this child’s life and help shape its identity. To lose the struggle against my disease would not just be a personal tragedy but would mean I did not fulfil my responsibility to another person. That is something I could not bear.

And so we battle on. A few weeks back we reached a milestone, when the mysterious growth inside Mel’s body grew larger than the mysterious growth in mine. As the months pass I look forward to seeing Mel’s expand, kicking playfully against her abdomen, as mine slowly shrinks. And by the time hers is ready to leave her body, I hope that mine has left my body as well. I can’t wait for the three of us to stare into the future, happy, healthy and together.

A few subtle differences between our wedding day and our first anniversary on Monday.

Monday, November 30, 2015

Floored by fatigue

“I was so exhausted I had to lie down for 20 minutes after thinking about brushing my teeth.”

Chemo patients often have war stories about their battles with fatigue – played out in the style of the Four Yorkshiremen – and that’s my contribution.

The first round of chemo left me largely unscathed, but this past week the second round has hit me hard. The all-encompassing body-and-mind fatigue that has left me whiling away that hours in bed has been more debilitating than anything I have experienced before.

The complete lack of physical energy makes it difficult to perform even the most basic tasks, and the absence of mental energy makes creative thought difficult to achieve. Sleep provides little relief, but nothing else does either.

The numbing fatigue turns small achievements into major victories. After a quarter hour psyching myself up to empty the dishwasher, I rewarded this act of domestic heroism with a half-hour rest.

The medical advice to us chemo patients is to stay active, even when we feel crippled by fatigue. A few times last week I jumped on the walking machine on our veranda, only to find myself puffing within minutes and quietly cursing the experts and those who brought their advice to my attention.

My less-tired self sees the clear wisdom in the advice, but in the depths of fatigue it is hard to be appreciative, let alone to follow it.

One consequence of resting impassively for so long is that small aches and pains that would normally be ignored make a big impact on the mind. Twinges of muscles, sore joint and shallow breathing, all of which are standard fare for a chemo patient, become mental fixations that are hard to ignore. After a while I craved distractions to take my mind off the fatigue and everything else what was competing for my attention.

There are a few fun things to do when the heavy clouds set in. It's a great chance to watch some quality television I might otherwise miss - The Beautiful Lie has been my favourite in recent weeks - and to read things that flow easily - that'd be The Mandarin Code. And the gift of The 1000 Dot-to-Dot Book has proven therapeutic (adult colouring-in for blokes, I reckon). And there was a James Rizzi jigsaw puzzle along the way, although I was a spectator to my mother's puzzling through much of it.

Still, I better get used to it. The experts say the fatigue is an inevitable part of chemo treatment, and can persist long after the treatment itself has finished.

The process of dose adjustment means the chemo drugs will continue to intensify. Dose adjustment means incremental increases in the potency of the chemo drugs each round, accompanied by regular blood tests, until it’s clear we’ve reached the limit of what my body can take, and then continuing at that level, or a little less. That way I get the most potent chemotherapy my body can tolerate.

The idea makes a lot of sense, but in practice it means at some point in the chemo I will debilitated by fatigue, or nausea, or infection vulnerability – or at least the blood test results that indicate those things. The only way to avoid reaching that point is have the stamina to last eight incrementally increasing rounds without reaching my limit. It would be a remarkable feat, and right now I don’t feel too remarkable.

The past day I’ve had a bit more energy and have managed to go to hospital and work. Hopefully this indicates I’ve passed the worst of this round. But I have no doubt more exhaustion lies ahead.
Mother and son. After that I needed a good lie down.


Tuesday, November 24, 2015

The path to my heart

The second round of chemotherapy drugs have just been infused, and so far the side-effects have been tolerable. As I was going through the round of treatment it struck me that the whole process could be explained well with a series of haiku poems. Enjoy. 


The path to my heart
Runs directly through my groin.
At least it does now.

With a jab and poke
The surgeon has created
An express route north.

And through the passage,
For five days in twenty-one,
Flows liquid saviour.

Like those that follow,
The day begins with a 'roid –
Breakfast of champions.

Appetite whetted,
I head from home to ward, where
Professionals loom.

Friendly smiles greet
Those who pass the saloon’s doors;
Hope mixed with pity.

Atop an arm chair
I get myself comfortable.
Position assumed.

EPOCH’s my order
With a side of R for some
Sweetness, extra tang.

A chemo barman
Can turn this toxic combo
Into sweet nectar.

(But before we start
A little pill for nausea
Lest lunch go to waste.)

First, Rituximab
Zero-ing in on B-cells
Both good and hostile.

New and expensive,
This one make sure the others
Can best hit their mark.

Next come the stayers,
Who travel as a trio;
Devil’s amigos.

Vincristine is one;
Doxorubicin as well;
Etoposide third.

Together they sit
Merged as one in a “cassette”:
Worst mix-tape ever.

Drip, drip, drip, drip, drip
Just a mere quarter litre
Takes five days to flow.

By my side throughout,
Releasing the special blend,
The CADD pump beeps, whirs.

The size of a brick,
This feat of technology
Let’s me freely roam.

A dainty little tube
Feeds the chemo-colada
Into my belly.

As I sleep, eat, walk,
Work or dance the lambada
My CADD remains close.

Just as the friendship
Starts to fray at the edges
Relief is at hand.

The drugs nearly drained,
The time comes for CADD and I
To part ways, for now.

No party's complete
Without a chaser farewell.
And this one has two!

Cyclophosphamide,
An alkylating agent,
Drip, drips its way in.

And a day later,
A quick jab to the belly,
To boost my white cells.

My filgrastim shot
May be all that saves me from
Neutropaenia.

Once more I trudge home
My bones sore, muscles aching
Concentration lost.

I lay down in bed
Fatigue fusing head, pillow.
Waiting for next time.

In weeks ahead
I will curse the toxic brew
Ebbing at my being.

But for years after
I will toast to my good health
In mind, body, soul.

Showing off my CADD pump.

Monday, November 16, 2015

The new normal

Tony is usually a man of few words. An old-school barber with an earthy beard and some weathered tatts on his neck, he is damn good at getting the job done with calm confidence and maximum discretion. So when I came in for my two-monthly cut on Tuesday and told him I wanted it off, all off, he was unfazed. “You see, um, it’s like this,” I half-spoke, half-whispered awkwardly. “I’ve been diagnosed with, um, cancer and the chemo means it’s all coming out. I figured I might as well get in early.”

Ever the cool professional, Tony sat me in the chair and draped me theatrically in a black smock. He reached for the clippers – this would be a number 1 cut – and got to work. Within minutes the salt-and-pepper (mostly pepper) locks from my head had gathered on my lap in the smock and my head’s full roundness was on display, with only a thin layer of hair remaining on top. When it came to shaving, I warned of the dangers of a blade given the blood-thinner I’d been taking, so instead Tony gave me a designer stubble look with an electric shaver. I told Tony it would probably be a while before I was back to visit. He said that when I was ready he had a shampoo I should try that was often used by cancer patients after chemo. Clearly I wasn’t the first.



I headed out the door and ran my hand over my shaven scalp. Bliss. Most people know the pleasure of running a hand over a freshly shaven head, but only those who have had the cut know the pleasure that comes to the head as well. Maybe this will be my permanent look, for summer at least, many years after the chemo has disappeared into the long-distant past of my personal history.

The decision to get my head shaved came the night before, when I was massaging some shampoo into my then-overgrown hair. After working the lather for a while I looked at my hands and saw some tufts had come out. I reached up again and tugged. The chemo drugs, nearly two weeks after I started treatment, were working their magic on my follicles. As I washed out the shampoo I wondered whether I wanted to let it fall out on its own time, but the hairs clogging the drain quickly illustrated the folly of that idea. Instead I would get ahead of the game and pay my man Tony a visit the next day.

As it happens the past week has played out rather well. As everyone from Bob Dylan to Paul Kelly has noted, they say the darkest hour is right before the dawn. So perhaps I shouldn’t be surprised that the medically complicated angst of a week earlier has been followed by a few cracks of sunlight.
There will, no doubt, still be dark periods ahead, but for now at least things are looking better.

The big development on the personal medical front was the installation of a new line to deliver the chemo treatment. To recap, a few weeks earlier I had a PICC line (peripherally inserted central catheter) installed in my left arm – basically it was a thin tube that exited the body at my inside elbow and then ran up a vein in my arm before turning a corner in the shoulder to end near the superior vena cava, a vein of the heart. While the chemo drugs the first round were successfully delivered via this line, it led to blood clots in the upper arm. As soon as the chemo drugs were in, the line was removed.

Debate raged among the cancer doctors and nurses I saw for the week that followed on just where would be the best place to install a new line. It turns out that specialists in this field have strong views on the merits of different locations, and different technologies. Some suggested we try again with a PICC line in the left arm, while others thought installing one in the right arm was a safer bet. Others thought I’d be better suited to a central catheter close to the heart with a tube that hangs down on the chest, and others again even suggested a Port-a-cath, which sits under the skin, sometimes for years at a stretch. (Chemocare offers a good overview of the options for intravenous treatment.)

But ultimately the doctors opted for a more unusual approach. Given my propensity for blood clots and the fact my tumour was in my mediastinum, limiting access to the superior vena cava, installing a line in the upper part of my body was just too risky. Instead, the line would be installed in the lower part of my body and deliver the chemo drugs to the SVC’s chip-on-its-shoulder counterpart, the inferior vena cava. This large vein carries de-oxygenated blood from the lower body to the heart, and extends all the way down to lumber vertebrae near the pelvis.

The technical name for what I was having installed was a tunnelled central venous catheter using the femoral line. In practice it means installing a tube that exits my body a bit below the belly button, then inside the body extends south to the groin before curving around to connect with the IVC. Under the skin, a couple of centimetres from the exit site, a cuff in the line has been created, around which scar tissue will grow to hold it more securely in place. Outside the body the tube extends for about 10 centimetres, part way along splitting into two parts (one to deliver chemo drugs, the other to take blood) and these are each capped with plastic devices that seal the ends. The procedure for getting this thing installed it not pleasant, but the local anaesthetic at the site and a mild sedative up top mean you hardly notice.

I later discovered that my procedure was one of the first to use a tunnelled catheter in the femoral line. Until recently, when patients were having a line installed in the lower half it would exit the body close to the site of the IVC, near the groin. This would mean the patient having, er, dangly bits near their dangly bits, creating a high risk of infection and making the delivery of the chemo drugs more challenging. Mine, however, was tunnelled, hence the much higher exit point, greatly reducing the risk of infection and making it far easy to administer the drugs. While a tunnelled device is pretty common for the top half, it’s a novelty for the bottom half. I do hope things go well for me and my
groin novelty.



So with my new line installed I am now ready for the next round of chemo starting on Wednesday. That’s when I’ll be hooked up to a portable CADD pump for five days as it slowly releases the drugs into the plastic cap, along the tube to the IVC, up to the heart and ultimately to my whole body.

The fatigue and other side effects will probably be more intense than they were the first time around, I’ve been warned. But at least I can run my hands along my shaved scalp as a distraction.

Monday, November 09, 2015

Seeking to battle the dragon

Super Mario Bros aficionados of the original Nintendo era will remember a certain comforting rhythm to the game. The objective was to slay the dragon each fourth level, and in doing so seek to liberate a princess. But to gain the chance to take on the dragon you needed to confront various minor villains along the way, from Goomba toadstools to Koopa Troopa turtles to weapon-wielding Hammer Brothers, all while navigating rough terrain and preserving health and wealth. But should these challenges prove too demanding a player would never even reach a dragon and the princess would forever remain captive.

Right now the chances for me to battle my dragon are proving rather elusive. Desperate as I am to unsheathe my sword and deliver a strong first blow, instead I find myself in close combat with more pesky minor enemies along the way.

A metaphor, possibly stretched to its limit.

A biopsy on the lump in my mediastinum a few weeks back appears to have caused some complications relating to my lungs. This has left me with a pneumothorax, haemothorax, subcutaneous emphysema and a bruise on my abdomen that resembles an eggplant at peak season in every way bar flavour. Coupled with that, the insertion of the PICC line (the catheter on my arm to deliver the chemo drugs) prompted a blood clot near my shoulder.

The upshot of that has been significant difficulty breathing and a tightness in my bicep that at one point made it difficult to get the arm through my sleeve. The various symptoms were concerning enough that I was admitted to hospital for eight days for monitoring and treatment. At one point a chest drain was inserted, removing two litres of blood from the pleural cavity around the lung, and for several days I was wandering the hospital ward with a unit resembling a portable fan. The PICC line, which was intended to remain for six months to carry the multiple rounds of chemotherapy, had to be removed less than a week after it went in.

These twin problems led to a medical quandary. Typically patients with a blood clot are given a blood thinner to prevent the clot spreading and help the body break it down naturally. But patients with a haemothorax need to slow the flow of blood to the pleural cavity, and so an anticoagulant is sometimes in order. This left the medicos trying to find a way to thin the blood near the clot in my shoulder and helping the blood in my chest clot. Better to try one at a time – stem the bleeding first, then seek to fix the clot. Tough judgement call for the doctors, and slightly terrifying for the patient.

(Once I was in hospital, though, I figured I might as well get the full experience. One morning during my stay my reddish face suddenly went a ghostly white and my blood pressure sank, prompting a MET call. I didn’t feel too bad, but the presence of a dozen worried doctors and nurses huddled around my bed within minutes to check almost every metric possible was both reassuring and terrifying all at once.)

On the upside, through this period the first round of chemo was administered – successfully. For five days the R-EPOCH mix of drugs were slowly released into my body through a portable CADD unit via the PICC line in my arm, a few millilitres each hour. Despite the dire warnings of the side-effects I would experience, I managed to escape them all on the first round. For now, at least, my energy levels remain decent, my hair remains in place and my lunch remains eaten.

The removal of the PICC line due to the blood clot has left a dilemma about how to deliver the chemo drugs next time around. The challenge is to get the chemo drugs circulating around the body without putting too much strain on a peripheral vein. I’ve heard multiple views on what to do – install the PICC line in the same arm (the left one) or try the right, or to opt for a catheter installed closer to the heart and bypass the arm altogether. Or try for something in the lower body and take a different avenue of approach. Each carry risks, including new clots, and all impose significant constraints on my movement. And until I know which path the doctors opt for ahead of the next round of chemo the week after next, I’m left with a nagging uncertainty about what lies ahead.

The week-long hospital visit blew off course my strategy for coping with the disease and the treatment. From very early on I was determined to maintain as much routine as possible. I wanted to continue to live at home with my wife, continue to cook my ridiculous risotto, continue to write speeches for the boss, continue to ride my bike around Lake Burley Griffin, continue to do crosswords over muesli on the weekend. I didn’t want to spend six months thinking of myself as a cancer patient, but instead as a bloke who happened to have cancer. I knew the treatment would take its toll, and at some points the cancer, the chemo and its side-effects would leave me unable to keep up my routines. The aim, though, was to seek to return to those routines whenever I could.

From very early on, though, that intention was undermined. In the first three weeks after the symptoms become apparent, two weeks were spent in hospital. Given my medical situation, there was nowhere I would rather have been.

But no place beyond prison is more designed to sap a person of their ability to live autonomously. Decisions are taken out of the hands of the patient and given to the institution, from meals to medication to bathing to exercise. Exposure to natural light is minimal and the temptation to while away the hours in bed is great. For some patients being under such control is essential but for others seeking to keep their wits it is a grinding frustration. Over the course of the week I found my ability to take care of myself slowly eroding.

I left bruised and tired, but was determined to make the most of the weekend that followed. The simple pleasures of Canberra were all the more pleasurable for someone desperate to stave off institutionalised life. Joining up with my wife, mother and sister-in-law, we headed to the shores of Burley Griffin to watch the sunset from funky Westside Park complex on Saturday, then joined the throngs at the Bus Depot Market on Sunday before heading to see the mighty Canberra Cavalry snare a victory in the baseball. All good fun, not least because of my grim determination to enjoy them, no matter what.

The experiences of the past few weeks have left my physiological state rather fragile. I have nagging doubts about my body and live in fear that it will once again turn against me, leaving me with a jolting pain or gasping for breath. I move slowly and deliberately, avoiding anything sudden that I might live to regret. Like in any context, trust is tough to earn and easy to lose. Right now, my body has given me little reason to trust it.

Exacerbating the pangs of self-doubt are the mix of medications that have become a staple part of my diet. Beyond the six drugs that form the chemotherapy treatment I have been taking five oral drugs to combat various side effects, as well as a daily injection to thin the blood.

The cumulative effective of this Breakfast of Champions is that over the course of the day my body passes through phases of extreme energy and extreme lethargy. In the first few hours after taking the drugs, the steroid being the most likely cause, I feel a jumpiness that leaves me tempted to act impulsively, depriving me of patience and judgement. I’ve learned the best response is to restrain myself and avoid yielding to the desire to act impulsively, instead sitting tight and waiting for it to pass.

Then later I’ll feel tired and confused, my brain struggling to keep up with the stimulus around it. During times like this taking in complex information proves difficult. I had to read the opening few paragraphs of a news story – The Guardian, if you’re curious – several times before it sunk into my brain. Taking in the contents of a novel – Steve Lewis and Chris Uhlmann’s page-turner The Mandarin Code – during a phase like this has been just about impossible. Multitasking, even simple things like reading and eating, is tougher than it should be. Rest seems to be the best response, and thankfully on the other side I find I’m at my most lucid and most able to connect with the rest of the world.

Since I started treatment my diet has changed significantly. For a few years before I fell sick I had sought to instill discipline in what I ate. I had slimmed down from about 130 kilograms to 105 kilograms and took a discerning approach to what I put in my mouth. No formal diet, but an acknowledgement that I ought to only eat in ways that valued highly the food I was eating. Avoiding comfort eating and taking in high-calorie, low-nutrition foods was a bit part of my strategy. I wasn’t always successful but it guided my thinking and eating, and for the most part it worked.

In recent weeks, both in hospital and home, my approach has changed significantly. I have began eating so much more, from biscuits to cups of tea to muesli bars to chocolate, as well as three decent meals a day. It is tempting to blame the rekindled appetite on the steroids, but I have my doubts. This seems even less likely as an explanation given the chemo has dulled my sense of taste, and only strong sweet and salty tastes penetrate the dull metallic sensation that swamps subtler flavours.

Instead, I think my greater appetite is a psychological response to my circumstances. In hospital and elsewhere I’ve seen bodies emaciated by the effects of cancer, chemo and radio – people left thin and gaunt, their bones protruding and their flesh bruised. The stories of people losing their appetite and struggling to eat during treatment are common. While I start with a rotund body far from this state, part of my subconscious is terrified of ending this way. That part of my subconscious wills me to eat, and eat plenty, right now, knowing that for now at least, my appetite remains strong. So this past weekend has been one of abundant bread and fruit and dips and salad and tea and biscuits. A mere bag of bones I ain’t.

The routine I am craving still seems some distance away. Multiple medical appointments dot my calendar over the course of a week, and the potent mix of pharmaceuticals cloud my ability to make firm plans. The fog of fatigue pervades most of my thinking. Sooner or later, though, I’ll seek to return to the patterns of living that keep me sane. I hope that’s not too far away. And then I can try once again to slay the dragon.



Thursday, November 05, 2015

Reasons to be grateful

I'm writing on the sixth day of an unscheduled hospital stay, so clearly treatment has got off to a rocky start. I'll write more about that another time, but for this post I want to focus on some of the positive things that have captured my imagination since the diagnosis.

If you ever doubt that you're part of a community, tell the world you have cancer and see what response you get.

Since I shared my news I've been filled with gratitude for the people, institutions and science that have given me such hope for the future. It is hard not to appreciate the privilege of which you benefit when you experience so many things fall into place so effortlessly to support a person suddenly in need.

When I was diagnosed a few weeks ago I wasn't sent home to die in dignity. Instead I was given the expertise of world-class professionals, access to state-of-the-art medical science, fantastic offers of support from family, friends and colleagues and an overwhelming confidence that Things Will Be Okay.

With this in mind, I want to take this post to celebrate the amazing things that have become apparent to me since the diagnosis. I'm not the mawkish type, but some things are just worth sharing with the world.

My gratefulness starts with those closest to me, who did all they could to be by my side. To step along this uncertain path on my own would be very lonely, so to do so with other people makes it so much more bearable. The emotional support is profound, but so to is the practical support to get me to appointments, keep track of the medications, sort out paperwork, eat decent meals and prepare the house for the changes that come with being cytotoxic. Knowing these things are under control gives me the peace of mind to focus on returning to health.

Then there are the messages of support from people far and wide, once I shared word of my situation. One of the silver linings of the dark cloud of this damn experience is that I have reconnected with some people I haven't spoken to in years. Many people have offered their own personal experiences of cancer, with uplifting stories of spirited battles and successful recovery. Others have shared stories where ultimately the patient lost the struggle. Those stories are tougher to hear but still I am glad I did. I've never sought to shield myself from unpalatable truths and don't intend to start now.

My workplace has gone above and beyond its obligations, giving me the flexibility I need to focus on my health while also giving me the sense of purpose that comes with remaining connected to a larger project. While it is not a large organisation the great people that they are left me without any doubt that I would be looked after. The sense of security was a great weight off my mind. Not being a breadwinner for others has left me with one fewer thing to fear. But for those in my plight with other mouths to feed and no source of income but their own blood and sweat, the despair must be all the greater. I am thankful for the support that comes with being part of an organisation with the capacity to help one of their number.

The diagnosis triggered a sophisticated institutional response that was truly remarkable. Once I was diagnosed with cancer I was quickly connected with the Canberra Region Cancer Centre that was part of the hospital in which I sat. From there my hand has been held every step of the way with care and compassion. I have been given the information I need to understand my condition, the practical guidance to appreciate the changes this will mean for my life and the psychological support to unburden myself in a safe space. 

The small acts of kindness from volunteers at the Cancer Centre and beyond are invaluable - the tea and coffee cart circulating the floor of the clinic, complete with Milo; the foot massages for gnarly, weathered patients' feet; the financial support for patients and their families doing it tough. 

The army of doctors and other medicos fighting for me has been humbling. Once we knew just what we were facing the docs were ready with the prescription. My lymphoma is being treated with a regimen of drugs known as dose-adjusted R-EPOCH. Essentially it's a mix of drugs delivered intravenously for five days at a stretch - six to eight rounds at three-weekly intervals. All up, it will be about half a year. Alongside the drugs come a series of injections and oral meds to take the edge off the side-effects, which can be devastating.

For the individual patient this is all a shock. But for the oncology professional this is daily life. With incredible emotional resilience these doctors deal with the cases before them, dispensing advice, drugs and reassurance as required. A complex hierarchy means the big decisions are made by those with experience, often as part of a collaborative process, while those beneath them make the daily clinical decisions. For the patient like me on the frontline it delivers the best of all worlds - continuity of care coupled with elite expertise.

Over time I'll get to know the doctors and nurses and other medicos at the Cancer Centre who are guiding me through this. But my initial observation is that they are incredible people who bring together a great awareness of the complexities of treatment with great warmth for the individual in their care. The clinical decisions they are making often involve fine judgement calls and rely knowledge that comes with experience. But the delivery of care is friendly and personable, recognising the needs and frailties of the person before them. Few people embody these characteristics, and so to be in the care of so many of them is a great joy.

It is comforting knowing that I am treading a well-worn path, and that while my cancer may not be common, it is also not too rare. I am the beneficiary of those who came before me - the researchers, doctors and patients who have each taken us an increment closer to managing the disease. Many people are fixated on cancer breakthroughs but instead we should celebrate the small improvements - the better-targeted drug, the better-abated side-effect, the more convenient delivery mechanism. Collectively each of these make the life of a patient so much better.

And all this is available at almost no cost to me as a patient. Much of it is covered by Medicare and the Pharmaceutical Benefits Scheme, though the hospital stays are paid for by the private health insurance I have contributed to for about a decade. Given none of us being treated for cancer sought our plight, and few made lifestyle decisions that contributed to our circumstances, it seems fitting that care would be an extension of the welfare state as a form of social insurance. The idea that I should have equal treatment to my neighbour seems only fair (although clearly international equity is far more elusive.) The wisdom of policy-makers allowing all of us to access world-class care is worth celebrating. And while I'm at it, thanks taxpayers - I promise you I'll make it worth your while to get me healthy again.

Even in the early stages of my treatment not everything has gone my way (might be more on that later). But I have every reason to be thankful that I'm battling the disease at this time, in this place and with these people by my side. I am truly lucky.


Wednesday, October 28, 2015

Countdown to chemo

Today I start my chemotherapy treatment, ready as I'll ever be to combat this disease and reclaim the health until recently I took for granted. This piece explains some of the steps along the way as I prepared my body and mind for what lay ahead.


The week before treatment started would be a flurry of tests as we sought to work out just what we were up against. The latest in diagnostic science would analyse every part of my body in every way to find out whether the lymphoma had spread to elsewhere. Regardless, the treatment would be similar through the chances of success less certain.

First up was the PET scan – as the internet explains, a positron emission tomography (PET) scan is a type of imaging test. It uses a radioactive substance called a tracer to look for disease in the body. Canberra has just one PET scan machine, and thankfully on Thursday morning it was at my disposal.

I happily admit to my support for all things nuclear, a source of science that has brought great positives to the world even as human have used some of its potential for ill over the decades. But the prospect of having a radioactive substance injected directly into the body gives some pause for thought. For a moment I squirmed at the notion, but then thought of the greater good to my health, for the short term at least. (The long term implications remain to me seen – the dosage of radioactivity is pretty hefty, and repeated exposures over the course of a lifetime could do lasting damage. It’s a risk I will have to take.)

Under the care of the nuclear medicine specialist I lay back in an armchair as a cannula was put in my left arm. For 20 minutes I sat back in darkness, my body nuzzled in warm towels as I drifted towards restfulness. Bliss. Then the specialist returned and a tube from the wall was hooked up to the cannula.

A soothing voice gave me a gentle warning that the tracer was now being injected, and it might feel a bit cool as it worked its way through my body. The fluid now entering my veins was a radioactive glucose, prepared at the Lucas Heights nuclear facility in southern Sydney. Regular pulses injected the glucose for about a minute as I continued to recline in the armchair, surrounded in darkness.

Slowly I felt the repulsive goo work its way through my system. The liquid felt thicker than my blood, gradually crawling up my left arm to my shoulder. It was dense and heavy, slightly cool, alerting me to each new part of the body that it reached. Then it spilled around the heart and hit the neck and throat. It felt like it was taken extra time to fill around the mass in my throat. Gradually it crawled to my temple, then to my right side and down my arm. Eventually my groin and legs were enveloped and I was entirely irradiated.

For nearly an hour I lay back as my natural circuitry spread the foreign object throughout my body, mixing with my blood so that it was even throughout. The sensation remained sickly, but I cannot tell if it was genuinely because of the nature of the fluid inside me or because of some psychological repulsion at a foreign object being so intimately incorporated into my being.

As my eyes grew heavy and I neared sleep my slumber was broken by a specialist telling me it was time to move to the next stage. I roused myself from the comfy arm chair and headed to the scanning room, where the images would be taken.

I was laid down on a platform, some support offered beneath my knees and a brace around my arms to keep them in position. The machine takes hundreds of images, some of them as tight as three millimetres from the next, so squirming around can significantly undermine effectiveness. Instead, the best thing is to be as still as possible as the images are being taken. Being in a deep dose certainly
helps.

Once I’d settled on the platform the specialists left the room and the machine was ready to do its thing. The platform slid through a vast metallic doughnut, able to capture images from all sides. Slowly the platform would slide me from one end to the other, pausing regularly for shots. Heavy mechanical sounds told me that there was plenty going on inside the machine surrounding my body.

Most of the time I kept my eyes shut, although on the odd occasion when I opened them the machine was unnervingly close. Were I prone to claustrophobia that might be a worry, but thankfully I was happy just to shut my eyes and zone out.

Twenty minutes later the kindly specialist came in to inform me it was all over. I was free to step up and take a seat in the waiting room. A cheese-and-tomato sandwich and an apple juice, the first things I’d eaten all day, were on offer. I browsed through a copy of an outdoor living magazine, the active adventurousness it advocated seeming almost pornographic given my state of mind and body. Still sleepy, I was wheeled back to my ward to await the outcome a few days later.

Other tests were not quite as dramatic. I had a CT scan on Friday at another site in an effort to gain further information on the spread of disease. Again my body received an infusion, this time of iodine, and I images were taken from all angles. But this one came acropper when it emerged that my body had not recovered from the biopsy surgery a week earlier and I had excessive amounts of oxygen circulating in my body. This oxygen, a nasty combination of a pneumothorax (gap in the lung) and subcutaneous emphysema, was messing with the test.

Clearly the results was causing concern for the routine operator conducting the test, who contacted his supervisor. As I lay flat on the CT scan bed he approached me and asked a rather unnerving line of questions. Had I been in hospital recently? Had I been in a fight lately? What was really going on?

Turns out the gap in the lung was a similar symptom to that experienced by many people who have recently copped a blow to the chest, and created a wave of suspicion that I had been involved in foul play. In my slightly addled state I informed the supervisor of my recent health travails and the biopsy surgery a week earlier. This appeared to satisfy his curiosity, and after consulting with my cancer specialist at the hospital he advised me to visit him that afternoon for a check-up. Fair enough. The MRI scan planned to follow immediately afterwards would need to be put on hold, he explained, because the images would not be much use.

I also undertook a bone marrow biopsy. It was a process I was warned would be quite painful (one person made a comparison to childbirth) but in the end was rather tame. Perhaps that was the impact of the mild sedative and the local anaesthetic. In the end I was I only gently moaning as I lay on my side while a pair of friendly medicos ground into my Iliac crest at the base of my spine to extract the requisite marrow. The mild pain was further relieved by the enthusiasm of the technicians at the quality of the sample they had extracted. We’ll know the outcome in a few days.

During the week ahead of chemo Melanie and I were forced to face the vexing issue of the risk of reduced fertility, or even sterility, given the chemicals used in the treatment process can do lasting damage. When you’re facing a personal existential challenge just getting to the other side is often objective enough but it’s nice to know that things can be done to preserve quality of life. To that end, we were encouraged to work with a fertility clinic to bank some semen should we (or indeed I) want to access it later on. The wisdom of this approach had been advised to me by others, and it was one we decided to follow.

Each step of the way through this whole process our hands were held by the incredible people at the Canberra Regional Cancer Centre. I don’t wish for this blog to be some morbid “review” of the place, ranking alongside Chinese takeaway on Yelp (“nice atmosphere, great service and I left without a single tumour! Three stars”) but I do want pay tribute to good care when I get it.

In the days ahead of chemo, the doctors and nurses have been a great source of knowledge, support and care. It is comforting to know that whatever arises they have it covered.

A chemo education session told me much of what I needed to know about what lay ahead. The mix of drugs that would be injected into my system would be tough and run a significant risk of adverse reactions. But there drugs to combat those reactions and my health would be monitored closely each step of the way. All sorts of things that had once seemed innocuous – being with a group of people, eating unpeeled fruit, flushing the toilet – now needed great extra care. And I needed to listen to the signals my body was sending far more acutely than I normally would. But regardless, I could get on with life, exercising, enjoying good food, even the occasional tipple.

When it comes to administering the drugs, the doctors decided to establish a PICC line (a peripherally-inserted central catheter). A nifty piece of medical science, this tube would enter my body on the inside of my left elbow and extend all the way up my shoulder to a vital area near my heart. It makes it easier and safer for the drugs to circulate through the body without me needing constant needle pricks and the risk of some of the smaller arm veins being overwhelmed by the drugs.

At the exit sits two tubes which can be used both for fluids going in, most often the chemo drugs, and bloods coming out as required. Once it’s in, it can stay there for months and beyond. Given the pocking and prodding I’d had over the past two weeks, a long-term solution seemed like a good one to me.

With the deft touches of people who have done it many times before, a pair of medicos lay me flat while they rubbed a gentle anaesthetic on my arm. Guided by an ultrasound they found the pathway up one of the veins of my arm and methodically passed it through. Given no nerve endings sit on that part of the body, the pain was minimal. A few days later a slight feeling of tightness remains in that arm, but that’s probably inevitable given the object now inserted in my body. I suspect in coming months that PICC will become my friend, and lifesaver.

Over the course of the week it has been tough to find moments of great mental clarity. On paper, the time before the chemo drugs are administered should be one of clear thoughts and plans for the future, but the reality for me has been a bit different. The lingering effects of the biopsy surgery a fortnight earlier has left me with some breathing difficulties, the pressure put by my tumour on the superior vena cava of the heart has required a steroid, the bone marrow biopsy has left a dull pain in my lower back, my body is battered and bruised from injections and the PICC line in my left arm has taken some getting-used-to. All up, I find myself so focused on the aches and pains of my body that readying myself for the next stage is tougher than I’d hoped.

But regardless, a PICC line inserted, my head filled with the medical science of treating lymphoma and the final test results on metastasis coming down the pipeline, I am ready to take the plunge into chemo. I do so with a mix of enthusiasm and anxiety, but comforted by the fact I am among a great number. Today I will head into the Cancer Centre, be dosed with drugs to see how my body responds, and slowly return to the health I once took for granted. Wish me luck.

The PICC line running up the inside of the arm should make treatment a whole lot easier.


Sunday, October 25, 2015

This is not a drill

Right now I'm part way through the battery of tests that inevitably follows a cancer diagnosis. It is still too soon to know if the lymphoma has spread. This post, enhanced by the pleasing effects of a mild steroid, captures the big reveal last Tuesday when I learned the result of my biospy, and some of my early reflections on the experience. At the moment I'm at home mustering my strength ahead of the start of chemo on Wednesday.


While sitting idle in my hospital bed awaiting the results of biopsy, in my head I had an image of how a patient got The Big News.

I pictured notification from a friendly nurse that I was expected at an appointment an hour or two down the track.

I pictured bringing together my wife and parents.

I pictured walking into a tastefully decorated room in the hospital, fresh flowers and a box of tissues on the table, a comfy chair awaiting me.

I pictured a collection of kindly hospital-scrubbed experts sitting around the table, there to meet every facet of my curiosity.

I pictured being gently broken the news and then slowly being supported by the experts around the table to care for me.

I pictured calm words of reassurance – “This will all be okay”.

Sure, the whole scene would be drenched in tears, but it felt right.

The reality was a bit different.

Last Tuesday morning I was laying in my hospital bed reading The Economist. Suddenly a young doctor, a junior of my main doctor, wandered to my bed side and pulled the blue curtain behind him to give us the illusion of privacy in a room shared with three other patients. “Ah, right, so we’ve got the results from the biopsy in,” he ventured with a moment of eye contact. “Looks like lymphoma,” he said, leaving the words to hang in the air.

“Holy moly,” I thought. “This is the news. This is the cancer. This is the thing I’ve been mulling over for days. And I’m here on my own reading The Economist contemplating my breakfast order.” I kept my calm and let the news wash over me. The process may have lacked ceremony, but it was information I’d been craving.

I imagine patients react in all sorts of different ways to been told news like that. Some rush to anger, others to denial and others to grief. Some, like me, head to curiosity. Perhaps it’s a defence mechanism, but to put some emotional distance between me and the problem I was confronting seemed sensible. If I could treat it like a tricky problem of logic rather than one of life and death, that might make it more bearable. So quickly I jumped in with some questions. Do we know what caused it? Do we know if it’s spread? How do we treat it? What do we do from here?

Understandably at this early stage the answers to most of those questions were beyond reach. We were looking at a non-Hodgkin lymphoma, a comparatively common occurrence. The cause would likely remain elusive, but treatment was definitely an option. Beyond that, I’d need to wait for my haematologist, who would come by later in the day to fill me in on more details. My wife returned to by bedside for the tail-end of the conversation and caught the details. Then the young doctor headed off to break other life-changing news elsewhere, and left us to mull over the realities of my new existence.

Right. So this is not a drill. We can now discount the fantasy that this is all a big mistake and that I really did have a sore throat best treated by gargling lemon tea and honey. This was lymphoma – a cancer – and if I didn’t fight back it would destroy me. I was facing a test of character as well as health, and it would take all of my inner resolve to meet that test. My wife and I shared a tender moment as the situation sunk in. The Economist didn’t hold nearly as much appeal as it did a few minutes earlier.

The next few hours was a daze as we waited for more information from the haematologist. We spread the world to the people who needed to know and sought to gather some information of our own from the internet and other experts that we knew. But knowing so few of the facts at this stage meant the search was fruitless. We would have to wait.

So instead we sought to map out what this would all mean. A change of lifestyle, a change of career plans, a test for relationships with wife and parents, an abandoned holiday plan, a hit to personal finances. All these ripples of consequence emanating from the stone (well, mediastinal mass, really) that had been chucked into the pond of my life. It was disturbing to think of all the sudden change, but then strangely comforting to know that there would be so many people around to help my with the transition.

That afternoon we met my haematologist, the blood cancer specialist who was there to cure what ails me. My charming doctor filled my mother and me in on the detail. This was a non-Hodgkin lymphoma, he confirmed – primary mediastinal B-cell lymphoma, to be precise. Yes, it was unfortunate, but it was also reasonably common and quite treatable. He presented me with a page from a recent report from The New England Journal of Medicine on that particular lymphoma, which included the eye-catching claim that a survival rate of 95 per cent over five years had been achieved with a particular course of treatment.

Chemotherapy would be the course of treatment for me – six to eight rounds of three weeks each. It would be a cocktail of chemicals administered intravenously, complemented with some oral medications to ease the side-effects. He ran through the different drug regimens on offer like a cocktail barman – there was R-CHOP and EPOCH and a few others, each with subtle differences. He had one in mind, but we weren’t sure quite which one it would be.

If I wanted it, treatment could be at the new cancer centre attached to The Canberra Hospital, adjacent to the very building in which I now sat. Here they had leading care, leading facilities and leading nurses, and an army of specialists willing to work together to help me battle the beast. Sounded pretty good to me.

It was then that I ventured my most naïve question. I had not altogether given up hope of following through on a long-planned trip to Hawaii to celebrate my mother’s 60th birthday. Would it be possible for me to go on the trip and then return for treatment? The doctor looked at me through disbelieving eyes and suggested that would not be wise. Treatment should start the following Wednesday, and I should get myself ready for it.

Game on.

It was such a joy for Mel and me to come home to a goodwill hamper from a great friend.

Thursday, October 22, 2015

What a difference a week makes

I wrote this on Sunday, at a point at which I was still awaiting my diagnosis. This post tells the story of my growing symptoms, entry to hospital and biopsy. As I wrote yesterday the diagnosis has since come back as primary mediastinal B-cell lymphoma. I'll write more about that in a little while.


What a difference a week makes.

As I sit here in the Patients Lounge (their decision on the apostrophe, but I digress) with my iPad perched across my knee I can't help but stare out the window at the amateur cricketers already rolling their arm over despite the early hour on a Sunday morning. A few days back I was dressed in whites as resplendent as theirs, only mine were a bit looser fitting at the back and revealed a saggy pair of underwear. Still, make me wicketkeeper, put the whole field in front of the stumps and no-one would be any the wiser. Until I leapt up for an appeal.

At least I'm out of the white gown now, and my pyjamas. I'm actually wearing a rather natty check shirt from Marks and Spencer, and a pair of high-tech hiking pants from Kathmandu (the retailer, not the Nepalese capital, but I digress). I bought these pants in January on my honeymoon for hiking the Milford Track in New Zealand. For more than 50 kilometres over four days they kept me warm, protected and dryish as Melanie and I trudged through pouring rain, blustering winds and a steady slope. But for the past four days the only trudging they've done is from my hospital room to the Patients Lounge, with the occasional detour to the toilet.

Still, it's good to be out of the room I share with three others in the cardio-thoracic ward of The Canberra Hospital. The others in the room are a nice bunch, but sharing a room with them is a bit draining. To my right is a grizzly middle aged chap who's paying the price for a life of revelry. The Cougher's lungs have the wheeze of a smoker's emphysema and his legs are the recipient of a great big skin graft following an accident of some sort. Across from me is The Gaffawer, a knockabout 30-something bloke from Queanbeyan with some dragon tattoos and a silly laugh who seems to find almost anything funny. Not sure what's wrong with him but there's a great big tube draining fluid from his belly, so something's up. Then there's The Groaner, a grand old dame of 88 whose mind is lucid but his body is slowly falling apart. Her varied ailments are all morphing into one, she can barely move and her arms are so battered with bruises from needles that the nurses can't get a new one in. "Not very good vampires, are they?" The Gaffawer joked yesterday. "Still need to study more," was The Groaner's deadpan response.

This has been my world these past few days.

Hard to believe that this time last week I was walking along the Brisbane River the night after a friend's wedding. Melanie and I had been so eager to enjoy the wedding, eating more than we should and making stupid jokes with people we were just getting to know. It was a breezy and carefree weekend, shaking off the strains of the week and toasting a new life for a happy couple on the cusp of exciting things.

But even by that stage I had an inkling something was up.

A few weeks earlier I'd felt a bit of tightness in my throat. Just occasionally I'd find myself short of breath after some rather unstrenuous reading the paper. Or swallowing bite of dinner would leave me wincing, even if my cooking wasn't terrible. Or I'd catch a sight of myself in the mirror and see a bulging jugular like I'd just picked a fight with a neighbour, even if I'd done nothing of the sort. But there was a long weekend coming up and I didn't want to miss it, so Melanie and I had a weekend away in a cabin by the coast.

When we got back the tightness was still there, so I did some online hunting then went to the GP for his view. Glandular fever, I thought, or perhaps something strange with my thyroid. The doctor had a feel and a peek, and suggested a blood test for the thyroid and an ultrasound for the throat to see what was in there. I was busy at work and didn't see any need for a rush over a niggling pain, so I put it low on my list of priorities.

I went back to the GP the next week for the results and heard the worst possible thing (well, it felt like that at the time) - "We can't find anything wrong with you - the blood tests are fine, although sodium is a tad high, and the throat ultrasound was all clear." For just a moment I thought the doctor suspected I was a hypochondriac making this up to get off work or satisfy a demand for attention. I knew I wasn't, but the tests weren't backing my case.

The GP suggested a CT scan on the neck, throat and upper chest would be in order, but suggested I wait a few days, presumably to see if this thing sorted itself out.

But the symptoms were getting worse. I'd lie in bed and feel a rush of blood to my head, a surging pulse around my brain that could only be avoided if I slept with a stack of pillows under my head. I threw a ball at baseball practice and felt light headed like the ball had thrown me. And I bent over at the fridge to grab something from the vegetable crisper and nearly fainted, a response I've never had before to wilting bok choy.

Something was up and I had to work out what. I'm from Melbourne but live in Canberra, and my parents' circle of friends is filled with medical experts, some of them actually qualified. As I recounted my symptoms to them they would pass them onto the panel of experts and the feedback was alarming. I also gave them access to the scans and radiographer report, which for good or ill is now available direct to the patient. My mother read me the Riot Act - this was serious and I had to be more assertive with my GP. If I wasn't, she'd come up and bash heads together. I was trying to deny it to myself, but she was right.

I made another appointment with the GP and explained the expanded symptoms. I pushed back and sought an x-ray on my chest. The GP acquiesced and suggested an over-the-counter heartburn medication for good measure. Fine.

But the x-ray revealed nothing but a strange shadow to the right of the trachea. Was that the source of my pain? Maybe, but the panel of medical experts in Melbourne weren't convinced, and neither was I.

So I went to the wedding in Brisbane and tried to silence my nagging fears. With enough activity and a determination to get on with life this thing would sort itself out. Mind over matter.

But by the time I got back, the symptoms had got worse again. I woke up one morning with an absurdly puffy face and neck, looking like Bert Newton after an all-night marathon at Crispy Creme. The flabbiness left me struggling to open my eyes, peering out through slits studded with dried sleepy mucus. It was hard to head to the office and maintain my dignity, but I washed my face down and gave it my best shot.

On Tuesday - five days ago - I headed back to the radiologist to get the CT scan on my neck, throat and chest. As I lay on the bed the clinician injected the iodine solution into a vein on my left arm and slid me into the hole of a giant metallic doughnut. As I stared up, the images of blue skies and birds and tree branches painted onto the ceiling gave me a sense of forced joy that made me uneasy.

I went home, drunk plenty of water to flush out the iodine from my body and went to sleep.

A few hours later I woke up and groggily reached for my phone. Time to check if the results from the scan had been posted. I logged in and saw that they had been, so I sharpened my mind and took in the detail. The radiologist's reported started gently enough.

No enlarged lymph nodes in the neck, parapharyngeal fat spaces are normal, digestive tract normal, vocal cords symmetric, no obstruction in neck vessels. What a pretty neck I must have.

Then it took a sharp turn:

Within the chest there is a superior mediastinal mass.  The mass measures 9.8cm x 8.4cm x 8.4cm.  The mass is heterogeneous in appearance with likely areas of necrosis centrally.  The mass is compressing the SVC and this is likely the cause of the patient's symptoms.  Multiple venous collaterals are noted to be opacified within the mediastinum and chest wall on the left relating to this lesion.

One need not be a medical expert to realise this was serious. Unexplained masses the size of an apple in the chest tend be rather serious. Some searching online decoded some of the medical speak. The mediastinum, it turns out, is a cavity in the upper chest that contains the heart and its vessels, the esophagus, the trachea, the thymus and assorted other vital things. The SVC, Wikipedia reveals, is the superior vena cava, a 24-millimetre diameter vein that carries deoxygenated blood from the upper half of the body to the heart. My symptoms - rush of blood to the head when lying down, dizziness when bending over, bulging neck veins and Crispy Creme puffiness - could be explained by this vein being compressed.

(The medical report then went on to breezily note that my lungs were clear, the upper abdomen was fine and there is "no suspicious focal bony lesion". "Apart from that, Mrs Lincoln, how did you enjoy the play?")

On one level, this knowledge was a relief. No, I wasn't making it up. No, it wasn't just in my head (in a manner of speaking). I had real hard medical evidence that there was something wrong with me. But that something was pretty damn serious and wouldn't go away on its own.

It was too late in the day to do anything, so I shared the news with Melanie and my parents, and planned my next move.

The next day, Wednesday, would need to be a day to Get to the Bottom of This. I went into work the next morning to tie up some loose ends. I knew I'd be away for a few days at least and didn't want to make things any more difficult than they had to be. I was self-conscious when I saw people in the office, aware that my face looked strange. I contacted the GP to make an appointment to plan to next step, but the earliest appoint was at was 2pm, so I took it.

But by 1pm the symptoms were getting worse. The vein in my neck was bulging again, swallowing was painful and the puffiness looked like another Crispy Creme binge. I went in early and spoke to the receptionist. I was determined to go to the hospital emergency ward, I explained, but wanted to see the GP first if I could. My symptoms were obvious enough that a slightly startled receptionist ushered me to a treatment room out the back.

She interrupted the GP's appointment with another patient and he came to see me. Clearly he was worried, most likely for my health but also perhaps for his medical liability insurance. The GP gave me an oxygen mask, checked my vital signs and gave me some words of reassurance. Yes, heading to emergency was a good idea, and yes I would be taken there in an ambulance. My penny-pinching plan to catch the bus was dashed. How about a taxi, I asked hopefully. Ambulance, he insisted.

Within a quarter hour two roguish paramedics were at my side. Again they checked my symptoms and took my vitals. For good or ill, they weren't far off healthy and my manner was calm, even if I did feel a bit anxious about what lay ahead. Once the paramedics were there they were determined to get me in the van. I was happy to go, and even walk myself the 30 metres to the ambulance out the front. Not possible, they insisted. Better that I lay on the rolling bed and they take me there.

So on I jumped to the bed sitting in the waiting room of the GP clinic, with startled mothers and their sniffly children huddled in the other corner looking on with curiosity. The two roguish paramedics hitched up the rolling bed with a guttural grunt and then sought to navigate the tight corner to the exit door. After a few false starts I repeated my offer to walk to the ambulance, but again it was refused. Our set of wheels, our rules, was the message.

Off we went to The Canberra Hospital (yes, with the slightly cocky definite article at the start), slightly further than the nearest hospital, but one that had the cardio-thoracic facilities I would probably need. With U2 coming through the tinny speakers, "Beautiful Day", I think it was, we headed down Northbourne Avenue. Staring upwards I saw the trees and street lights at an angle I'd never seen before.

The next few hours was a flurry of activity after I arrived at emergency. I'd stabilised a bit and so my symptoms weren't as obvious. I slid down the triage list as the doctors and nurses looked at me, and then up the list as they studied the radiologist's report my GP had helpfully printed for me. At one point I was demoted from the inner belly of the emergency ward down to the waiting room for walk-in cases. "But with a prominent seat where the nurses can see you," the warden said to soften the blow of my triage demotion.

Eventually I was admitted. Helpful young doctors came to speak to me to find out more. In truth, a mass in the mediastinum is not on its own a cause for a visit to emergency, given these things move slowly and the treatment takes place over a course of months, not days. But the pressure the mass was placing on the vein from my heart was a big deal, and an urgent one, that needed swift attention.

I was checked into the respiratory ward, more because there was a spare bed there than because it suited my ailments, and settled in for the night. Melanie and my mother had already made it to my bedside - my mother having flown in from Melbourne - and we were taking stock.

The evidence was that I had a giant lump in my upper chest, pushing against a heart vein and sitting pretty close to other vital passages. We needed to work out what it was and what to do about it. And we needed to find a way to ease the pressure in the mean time.

Behind the scenes the doctors were fighting their own battles. Who should treat me? How should I be treated? When could it all happen? And when could they go home to their families.

To ease the pressure on the heart vein I was given a steroid, which despite its Olympian reputation has the effects of reducing swelling rather than increasing it. Within hours it seemed to work, and I was breathing and filtering blood much more easily.

As for working out what was in the mass in my chest, the first plan was for a small biopsy to take a sample. Then the surgeon got bolder and decided he wanted to take a larger chunk, about the size of a 50-cent piece. This would require a general anaesthetic and invasive surgery, with two dirty great cuts to my chest - one to take the sample and another to drain away the fluids disturbed in my chest. Clearly I'd be leaving this place with scars.

But cut me open, Doc - let's see what we've got.

And so that's how things have stood since Thursday afternoon. My physical recovery from the surgery was good, helped by the availability of an injection of a painkiller direct into my arm at the push of a button - my push of the button. Soon the painkiller was removed, and the oxygen mask, and the saline drip, and eventually the tube draining the unpleasant fluids stirred up inside my chest from the procedure.

By Friday afternoon I was mobile once again, able to wander around the ward, use the bathroom on my own and create a comfortable groove on one of the old leather couches in the
Patients Lounge.

Now I'm playing the waiting game, seeking to find out just what I'm up against. What is this mass of cells? Is it benign or malignant? Has it spread? Will it kill me?

There's no good outcome from this wait - there's just bad and worse.