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.